Outcomes of Research or Clinical Trials Activity Levels Acute Flaccid Paralysis Ageing Anaerobic Threshold Anaesthesia Assistive Technology Brain Cardiorespiratory Cardiovascular Clinical Evaluation Cold Intolerance Complementary Therapies Continence Coping Styles and Strategies Cultural Context Diagnosis and Management Differential Diagnosis Drugs Dysphagia Dysphonia Epidemiology Exercise Falls Fatigue Fractures Gender Differences Immune Response Inflammation Late Effects of Polio Muscle Strength Muscular Atrophy Orthoses Pain Polio Immunisation Post-Polio Motor Unit Psychology Quality of Life Renal Complications Respiratory Complications and Management Restless Legs Syndrome Sleep Analaysis Surgery Vitality Vocational Implications

Title order Author order Journal order Date order
Category: Quality of Life

Title: Life satisfaction in persons with late effects of polio. Applied Research in Quality of Life
Author: Lund ML, Lexell J.
Affiliation: Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden. [email protected]
Journal: Disability and Rehabilitation
Citation: 2009;31(19):1592-7.
Publication Year and Month: 2009 09

Abstract: PURPOSE:
To assess the relationship between participation and problems with participation in life situations, and life satisfaction in persons with late effects of polio.

METHODS:
One hundred fifty-eight persons with late effects of polio responded to a postal questionnaire including the Swedish versions of the Impact on Participation and Autonomy Questionnaire (IPA-S) and Life Satisfaction Questionnaire (LiSat-11).

RESULTS:
The persons' perceived participation in the five domains of participation in the IPA-S was significantly correlated with their satisfaction with life as a whole and with most of the 10 domains of life satisfaction. Significant differences in satisfaction with life as a whole and with eight of the 10 domains in LiSat-11 were found between groups of increasing severe problems with participation. Greater number of reports of severe problems with participation corresponded with gradually decreased satisfaction with life as a whole and with satisfaction in the eight domains in LiSat-11.

Conclusions: Perceived participation and problems with participation in life situations are determinants of life satisfaction in persons with late effects of polio. This implies that addressing participation and problems with participation in the rehabilitation of persons with late effects of polio may lead to an enhanced life satisfaction.

Outcome of Research: More research required

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Category: Quality of Life

Title: An explanatory model of health promotion and quality of life for persons with post-polio syndrome.
Author: Stuifbergen AK, Seraphine A, Harrison T, Adachi E.
Affiliation: School of Nursing, The University of Texas at Austin, 1700 Red River, Austin, TX 78701, USA. [email protected]
Journal: Social Science & Medicine
Citation: 2005 Jan;60(2):383-93.
Publication Year and Month: 2005 01

Abstract: Although previous studies have examined selected factors influencing health promoting behaviors or quality of life, the complex interplay of these variables in persons with different chronic disabling conditions has not been investigated. This study tested an explanatory model of variables influencing health promotion and quality of life originally developed with a sample of persons with multiple sclerosis in a new sample of persons living with post-polio syndrome (PPS) in the USA. The sample of 1603 persons with PPS (1123 females, 478 males and 2 unknown) completed a battery of instruments including measures of severity of polio-related impairment, barriers to health promoting behaviors, resources, self-efficacy, acceptance, health promoting behaviors and perceived quality of life. A model originally developed in a sample of 786 persons with multiple sclerosis was assessed and modified using the weighted least squares procedure (WLS) which is implemented by LISREL8. The structural equation analyses resulted in a proper solution that exhibited adequate fit: chi2 (8, N = 1549)=84.22, p<0.05; GFI=0.96, IFI=0.90, CFI=0.90. The antecedent variables accounted for 65% of the variance in the frequency of health promoting behaviors and 53% of the variance in perceived quality of life. The model test supports the hypothesis that quality of life is the outcome of a complex interplay between contextual factors (severity of impairment), antecedent variables, and health promoting behaviors. It also suggests that the relationships among these variables are similar in samples of persons with two different chronic conditions. Further research using a qualitative approach is needed to clarify other contributors to quality of life in persons with post-polio syndrome.

Conclusions:

Outcome of Research: More research required

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Category: Assistive Technology, Quality of Life

Title: Assistive technology and prediction of happiness in people with post-polio syndrome
Author: Spiliotopoulou G, Fowkes C, Atwal A
Affiliation: Brunel University, School of Health Sciences and Social Care , Uxbridge, UB8 3PH , UK
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil Assist Technol. 2012 May;7(3):199-204. doi: 10.3109/17483107.2011.616921. Epub 2011 Oct 6
Publication Year and Month: 2012 05

Abstract: PURPOSE: To explore the relationship between level of happiness in people with post-polio syndrome (PPS) and assistive technology (AT) by taking into account confounding factors such as age, gender and house composition.

METHOD: Existing data from 218 adults with PPS, who had completed a cross-sectional survey conducted by the British Polio Fellowship in 2007, were used for a secondary quantitative analysis. Ordinal logistic regression was applied to determine whether ownership of or the need for AT predicted happiness in people with PPS.

RESULTS: Ownership of AT did not predict happiness, whereas the perceived need for AT was a significant predictor of feeling less happy (p = 0.028). Among the different types of AT needed, only need of home adaptations combined with major equipment was close to being significantly associated with less happiness (p = 0.078). Being older (p < 0.001) and living with a partner (p < 0.001) significantly increased the likelihood of feeling happier.

Conclusions: The findings indicate the importance of the contribution of need for AT in explaining happiness in people with PPS. The fact that users reported unmet equipment needs urge for increased user decision making and better understanding of why perceived needs are not resolved.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Depression and life satisfaction among people ageing with post-polio and spinal cord injury.
Author: Kemp BJ, Krause JS.
Affiliation: Rehabilitaion Research and Training Center On Aging With Spinal Cord Injury, Rancho Los Amigos Medical Center, Downey, CA 90242, USA.
Journal: Disability and Rehabilitation
Citation: 1999 May-Jun;21(5-6):241-9.
Publication Year and Month: 1999 05

Abstract: PURPOSE AND BACKGROUND:
Attention has recently begun to focus on the ageing of individuals with disability, not only as a long-term follow-up issue but as a unique developmental issue itself. The majority of individuals with an onset of disability before age 30 can now expect to live into their 60s, 70s and beyond. Most of the secondary medical conditions that foreshortened life expectancy have been controlled and improved rehabilitation techniques have evolved over the last 50 years. The average age of persons with post-polio in the United States is over 50 and the average age of persons with spinal cord injury is in the late 40s. New medical, functional and psychosocial problems have been discovered among persons ageing with these and other disabilities. Most of these problems lack sufficient scientific explanation, and therefore, clinical interventions. Quality of life (QOL) issues become involved as these changes occur. From a psychological perspective, QOL can be either positive, as reflected in high life satisfaction, or negative, as reflected in distress and depression.

METHODS:
This study reports on life satisfaction and depression in 360 persons, 121 with post-polio, 177 with SCI and 62 non-disabled age-matched comparisons. The Geriatric Depression Scale and the Older Adult Health and Mood Questionnaire assess depressive symptomatology and a 10-item life satisfaction scale with four-point ratings on each item used.

RESULTS:
Life satisfaction varied by the group, with the non-disabled group higher than one or both of the other two groups on all scales and the post-polio group higher than the SCI group on six scales. Satisfaction with health, finances, work and overall life were most different. 22% of the post-polio group, 41% of the SCI group and 15% of the non-disabled group had at least significant repressive symptomatology.

Conclusions: The results for each group are discussed in terms of their relation to other coping variables that were assessed, particularly social support and coping methods.

Outcome of Research: More research required

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Category: Quality of Life

Title: Disability and quality of life in individuals with postpolio syndrome.
Author: Ahlström G, Karlsson U.
Affiliation: Research and Development Unit, Psychiatry and Habilitation, Orebro Medical Centre Hospital, Sweden. [email protected]
Journal: Disability and Rehabilitation
Citation: 2000 Jun 15;22(9):416-22.
Publication Year and Month: 2000 06

Abstract: PURPOSE:
The purpose of the study is to investigate disability and quality of life in individuals with the characteristic symptoms of postpolio syndrome.

METHOD:
Disability is assessed by means of the self-report activities of daily living instrument, and quality of life by means of Kaasa's questionnaire and the quality of life profile.

RESULTS:
The 39 subjects have on average lived with polio sequelae for 52 years. Their main difficulties are with moving, lifting and carrying. This means restricted mobility, sedentary activities and a need to prioritize. Half of them feel that polio has lessened their possibilities in life, and a quarter have still not accepted the limitations polio has involved. Nevertheless the majority report a high level of psychosocial well-being, and almost a quarter say that living with polio has meant personal development and strength. We found a significant correlation between on the one hand disability with regard to ambulation, arm strength and finger strength on the self-report ADL, and on the other hand the number of negative problems on the quality of life profile (0.33-0.45).

Conclusions: The latter instrument needs further testing before its validity can be determined with certainty.

Outcome of Research: More research required

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Category: Quality of Life

Title: FACTORS ASSOCIATED WITH QOL OF POLIO SURVIVORS IN JAPAN
Author: Satoru SAEKI and Kenji HACHISUKA
Affiliation: Department of Rehabilitation Medicine, University of Occupational and Environmental Health.
Moji Medical Center, Kitakyushu, Japan
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: JJOMT 54 (2006): 84-90.
Publication Year and Month: 2006 02

Abstract: Objectives: To examine the association of impairments and functional disabilities with health-related quality of life (QOL) of polio survivors in Japan.
Design: Cross-sectional survey.
Settings: Post-polio clinic at a university hospital.
Participants: Polio survivors (N=39) with mild muscle weakness living in the community who voluntarily participated in a health examination for post-polio syndrome.
Interventions: Not applicable.
Main Outcome Measures: The Medical Outcome Study 36-Item Short-Form (SF-36).
Results: Mean score on the physical component scale (43.0) of the SF-36 was lower than that of the mental component scale (52.2), and the vitality subscale for men was higher than that for women. Multivariate analyses identified that the physical dimension of the SF-36 was affected by muscle weakness, while the mental dimension of the SF-36 was affected by personal care activities.

Conclusions: Conclusions: Polio survivors with reduced physical functioning may maintain the mental aspect of QOL using their previous coping strategies to fight functional limitations. Coping with new health problems and adapting to the environment should be examined from not only the physical but also the mental viewpoint of QOL for polio survivors.

Outcome of Research: More research required

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Category: Quality of Life

Title: Factors associated with reduced quality of life in polio survivors in Korea
Author: Yang EJ (1), Lee SY (2), Kim K (3), Jung SH (4), Jang S-N (5), Han SJ (6), Kim W-H (7), Lim J-Y (1)
Affiliation: (1) Department of Rehabilitation Medicine, Seoul National University Bundang Hospital, Seongnam, Republic of Korea; (2) Department of Physical Medicine and Rehabilitation, Soonchunhyang University Bucheon Hospital, Gyeonggi, Republic of Korea; (3) Department of Rehabilitation Medicine, Seoul National University Hospital, Seoul, Republic of Korea; (4) Department of Rehabilitation Medicine, Seoul National University Boramae Medical Center, Seoul, Republic of Korea; (5) Red Cross College of Nursing, Chung-Ang University, Seoul, Republic of Korea; (6) Department of Rehabilitation Medicine, Ewha Womans University Medical Center Seoul, Republic of Korea; (7) Department of Rehabilitation Medicine, National Rehabilitation Center, Seoul, Republic of Korea; Xi'an Jiaotong University School of Medicine, China
Journal: Public Library of Science
Citation: PLoS One. 2015; 10(6): e0130448. doi: 10.1371/journal.pone.0130448
Publication Year and Month: 2015 06

Abstract: The purpose of this study is to assess health-related quality of life in polio survivors (PS) compared with that in the general population in Korea. Polio survivors (n = 120) from outpatient clinics at two hospitals, healthy controls (HC, n = 121) and members of the general population with activity limitations (AL, n = 121) recruited through a proportional-allocation, systematic sampling strategy from the Fourth Korean National Health and Nutrition Examination Survey were surveyed with self-rated health-related quality of life (Euro QoL five-dimensions). The proportion of participants who reported problems in mobility, usual activity, and symptoms of anxiety/depression were higher in the PS group compared with the HC and AL groups. There was no significant difference in the self-care dimension across the groups. Polio-specific questionnaire, pain, depression, fatigue, Modified Barthel Index (K-MBI) and Short Physical Performance Battery (SPPB) were assessed in the PS group. Those with post-poliomyelitis syndrome had greater problems in mobility, usual activity, and depression/anxiety. Polio survivors, especially those with more pain and fatigue symptoms, and those who did not have access to medical services had poorer health-related quality of life. These findings afford useful information for potential intervention improving quality of life in polio survivors.

Conclusions: In conclusion, the QoL of polio survivors is worse than that of the general population in terms of physical and functional status. Polio survivors experienced greater restriction in mobility and activity, greater pain, and greater depression/anxiety compared with controls, although there was no difference in the self-care domain. To improve the HRQoL of polio survivors, we need to provide better rehabilitation services.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Growing older with post-polio syndrome:
Social and quality-of-life implications

Author: Andrea Duncan and Zinnia Batliwalla
Affiliation: 1Department of Occupational Science & Occupational Therapy, University
of Toronto, Toronto, ON, Canada
2March of Dimes Canada, Toronto, ON, Canada
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: SAGE Open Medicine
Volume 6: 1–7
Publication Year and Month: 2018 07

Abstract: Objectives: To understand the quality-of-life implications for post-polio syndrome survivors.
Methods: For this qualitative study, a focus group methodology, with a case study design, was used. The data were analyzed
for themes using a social ecological conceptual framework.
Results: Three focus groups were conducted with a total of 24 participants (N=24). Participants defined quality of life as
being able to engage in meaningful activities of daily living. Participants shared experiences of adapting to declining physical
health and embracing new activities of daily living. They expressed hope and shared stories that demonstrated resiliency.

Conclusions: The literature states that individuals aging with post-polio syndrome express concern that health providers
often know little about their disability condition. The participants in this study reflected this experience by sharing feelings of
misunderstanding from the medical community and expressing a desire to have more dynamic education for health providers.

Outcome of Research: More research required

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Category: Quality of Life

Title: Health related quality of life in Turkish polio survivors: impact of post-polio on the health related quality of life in terms of functional status, severity of pain, fatigue, and social, and emotional functioning
Author: Yesim Garip (1), Filiz Eser (2), Hatice Bodur (2), Bedriye Baskan (2), Filiz Sivas (2), Ozlem Yilmaz (2)
Affiliation: (1) Department of Physical Medicine and Rehabilitation, Ankara Basak Medical Center, Ankara, Turkey; (2) Department of Physical Medicine and Rehabilitation, Ankara Numune Training and Research Hospital, Ankara, Turkey
Journal: Brazilian Journal of Rheumatology (Revista Brasileira de Reumatologia)
Citation: Rev Bras Reumatol. 2015 Mar; dx.doi.org/10.1016/j.rbre.2014.12.006
Publication Year and Month: 2015 03

Abstract: OBJECTIVE: To determine the impact of postpolio-syndrome on quality of life in polio survivors.

METHODS: Forty polio survivors were included in the study. Twenty-one patients fulfilling the Halstead's postpolio-syndrome criteria participated in postpolio-syndrome group. The remaining nineteen patients formed non-postpolio-syndrome group. Control group was composed of forty healthy subjects. Quality of life was evaluated by Nottingham Health Profile, depression by Beck Depression Scale and fatigue by Fatigue Symptom Inventory. Isometric muscle strength was measured by manual muscle testing.

RESULTS: Total manual muscle testing score was 26.19 ± 13.24 (median: 29) in postpolio-syndrome group and 30.08 ± 8.9 (median: 32) in non-postpolio-syndrome group. Total manual muscle testing scores of non-postpolio-syndrome group were significantly higher than that of postpolio-syndrome group. Patients with postpolio-syndrome reported significantly higher levels of fatigue and reduced quality of life in terms of physical mobility, pain and energy when compared with patients without postpolio-syndrome and control group. It was not reported a statistically significant difference in social and emotional functioning and sleep quality between postpolio-syndrome, non-postpolio-syndrome and control groups. Also it was not found any statistically significant difference in Beck Depression Scale scores among the groups.

Conclusions: Postpolio-syndrome has a negative impact on quality of life in terms of functional status, severity of pain and energy. The identification, early recognition and rehabilitation of postpolio-syndrome patients may result in an improvement in their quality of life.

Outcome of Research: Not applicable

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Category: Pain, Quality of Life

Title: Impact of pain on quality of life in patients with post-polio syndrome
Author: Werhagen L, Borg K
Affiliation: Division of Rehabilitation Medicine, Department of Clinical Sciences, Karolinska Institutet Danderyd Hospital, Stockholm, Sweden
Journal: Journal of Rehabilitation Medicine
Citation: J Rehabil Med. 2013; 45: 161–163. doi: 10.2340/16501977-1096
Publication Year and Month: 2013 00

Abstract: OBJECTIVE: Post-polio syndrome is a neurological disorder occurring several years after an acute polio infection. The main symptoms are increased muscular weakness and atrophy, fatigue and pain. Pain is present more often in younger individuals and in females and, according to the visual analogue scale (VAS), the intensity of pain is relatively high. The aim of the present study was to analyse the impact of pain on quality of life in patients with post-polio syndrome.

DESIGN: Transversal study.

PATIENTS AND METHODS: Patients with post-polio syndrome underwent a thorough neurological and general examination. They were interviewed about the presence and intensity of pain during the previous 3 months, then completed the quality of life inventory Short-Form 36 (SF-36), which included questions about pain during the previous 4 weeks, and rated their pain intensity during the previous 24 h according to the VAS.

RESULTS: Seventy-seven of the patients (68%) experienced pain at the examination. Pain was found to have a significant impact on the SF-36 subdomains Vitality and General health. A correlation was found between pain during the previous 3 months, the previous 4 weeks, and the previous 24 h.

DISCUSSION: Pain is common in patients with post-polio syndrome. Although patients have a high mean VAS score the pain only affects quality of life for Vitality and General Health, but not for other physical and mental domains.

Conclusions:

Outcome of Research: Not applicable.

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Category: Quality of Life

Title: Impact of post-polio-related fatigue on quality of life
Author: On AY, Oncu J, Atamaz F, Durmaz B
Affiliation: Department of Physical Medicine and Rehabilitation, Ege University Medical School, Izmir, Turkey
Journal: Journal of Rehabilitation Medicine
Citation: J Rehabil Med. 2006 Sep;38(5):329-32
Publication Year and Month: 2006 09

Abstract: OBJECTIVE: To assess the impact of post-polio-related fatigue on quality of life.

DESIGN: Cross-sectional case control study.

SUBJECTS: Patients without additional health problems that may induce fatigue were selected from among 82 polio survivors. Twenty-six patients with post-polio syndrome and 10 without post-polio syndrome were included. Control group consisted of 30 healthy volunteers.

METHODS: We assessed presence and severity of fatigue by Fatigue Severity Scale, quality of life by Nottingham Health Profile, and impact of fatigue on quality of life by Fatigue Impact Scale. Leg muscle strength was measured by manual muscle testing.

RESULTS: Strength of leg muscles showed no differences between the patients with and without post-polio syndrome. Patients with post-polio syndrome reported significantly higher levels of fatigue and reduced quality of life compared with both patients without post-polio syndrome and control group. Fatigue Impact Scale revealed that fatigue did not significantly impair mental health, but had a negative impact especially on physical and psychosocial functioning of the patients with post-polio syndrome.

Conclusions: Post-polio-related fatigue seems to be an important factor for further impairment of quality of life in polio survivors.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Life purpose: effect on functional decline and quality of life in polio survivors.
Author: Harrison TC, Stuifbergen AK.
Affiliation: School of Nursing, University of Texas-Austin, USA. [email protected]
Journal: Rehabilitation Nursing
Citation: 2006 Jul-Aug;31(4):149-54.
Publication Year and Month: 2006 07

Abstract: This article explores the protective effects that finding a purpose in life has on the level of physical and mental impairment and overall quality of life. Results were gathered from a national sample of 2,153 polio survivors. Although the combined social and physical experience of living with the disabling effects of polio has been associated with accelerated aging due to an increased allostatic load, finding a purpose in life may diminish these effects. The findings of this study indicate that purpose in life is associated with less perceived decline in health. Moreover, purpose in life is predictive of better quality of life despite levels of physical and mental impairment. Rehabilitation nurses should consider ways to help persons with polio maintain activities and interests that promote their sense of purpose in life.

Conclusions: Rehabilitation nurses should consider ways to help persons with polio maintain activities and interests that promote their sense of purpose in life.

Outcome of Research: More research required

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Category: Quality of Life

Title: Life satisfaction and self-reported impairments in persons with late effects of polio.
Author: Lexell J, Brogårdh C.
Affiliation: Department of Health Sciences, Lund University, 22100 Lund, Sweden. [email protected]
Journal: Annals of Physical and Rehabilitation Medicine
Citation: Volume 55, Issues 9–10, December 2012, Pages 577-589
Publication Year and Month: 2012 12

Abstract: Objective
Decades after an acute poliomyelitis infection many persons experience new symptoms or impairments which may affect their life satisfaction. The objective of this study was to investigate the association between life satisfaction and self-reported impairments in persons with late effects of polio.

Material and methods
One hundred and sixty-nine persons (104 women and 65 men) with prior polio responded on admission to rehabilitation to the Life Satisfaction Questionnaire (LiSat-11) assessing satisfaction with life as a whole and 10 domains of life satisfaction and to a 13-item questionnaire assessing self-reported impairments related to late effects of polio.

Results
A majority was to some degree satisfied with life as a whole and with all 10 domains of life satisfaction in LiSat-11, but less than 20% was very satisfied or satisfied with their somatic health. Muscle fatigue, muscle weakness, general fatigue, muscle and/or joint pain during physical activity and cold intolerance were the most frequently reported impairments. Overall, those who rated themselves as not satisfied (according to LiSat-11) reported significantly higher degrees of impairment than those who were satisfied. The relationships between the items of life satisfaction in LiSat-11 and the items in the self-report questionnaire varied from −0.01 to −0.64.

Conclusions: Satisfaction with life as a whole, and different domains of life satisfaction are low to moderately associated with self-reported impairments. This implies that rehabilitation interventions must address not only self-reported impairments but also activity limitations and participation restrictions in order to enhance life satisfaction in people with late effects of polio.

Outcome of Research: More research required

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Category: Quality of Life

Title: Long-term socio-economic consequences and health care costs of poliomyelitis: a historical cohort study involving 3606 polio patients.
Author: Nielsen NM, Kay L, Wanscher B, Ibsen R, Kjellberg J, Jennum P.
Affiliation: 1 Department of Epidemiology Research, Statens Serum Institut, Artillerivej 5, 2300, Copenhagen S, Denmark. [email protected]
2 The PTU Rehabilitation Centre, Fjeldhammervej 8, 2610, Rødovre, Denmark.
3 Danish Center for Sleep Medicine, Department of Clinical Neurophysiology, Center for Healthy Ageing, Faculty of Health Sciences, University of Copenhagen, Glostrup Hospital, Copenhagen, Denmark.
4 Danish Institute for Local and Regional Government Research, Copenhagen, Denmark.
Journal: Journal of the Neurological Sciences
Citation: 2016 Jun;263(6):1120-8.
Publication Year and Month: 2016 06

Abstract: Worldwide 10-20 million individuals are living with disabilities after acute poliomyelitis. However, very little is known about the socio-economic consequences and health care costs of poliomyelitis. We carried out a historical register-based study including 3606 individuals hospitalised for poliomyelitis in Copenhagen, Denmark 1940-1954, and 13,795 age and gender-matched Danes. Participants were followed from 1980 until 2012, and family, socio-economic conditions and health care costs were evaluated in different age groups using chi-squared tests, boot-strapped t tests or hazard ratios (HR) calculated in Cox-regression models. The analyses were performed separately for paralytic and non-paralytic polio survivors and their controls, respectively. Compared with controls a higher percentage of paralytic polio survivors remained childless, whereas no difference was observed for non-paralytic polio survivors. The educational level among paralytic as well as non-paralytic polio survivors was higher than that among their controls, employment rate at the ages of 40, 50 and 60 years was slightly lower, whereas total income in the age intervals of 31-40, 41-50 and 51-60 years were similar to controls. Paralytic and non-paralytic polio survivors had a 2.5 [HR = 2.52 (95 % confidence interval (CI); 2.29-2.77)] and 1.4 [HR = 1.35 (95 % CI; 1.23-1.49)]-fold higher risk, respectively, of receiving disability pension compared with controls. Personal health care costs were considerably higher in all age groups in both groups of polio survivors. Individuals with a history of poliomyelitis are well educated, have a slightly lower employment rate, an income similar to controls, but a considerably higher cost in the health care system.

Conclusions: Individuals with a history of poliomyelitis are well educated, have a slightly lower employment rate, an income similar to controls, but a considerably higher cost in the health care system.

Outcome of Research: More research required

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Category: Quality of Life

Title: Multiple Chronic Medical Conditions and Health-Related Quality of Life in Older Adults, 2004–2006
Author: John P. Barile, PhD,corresponding author William W. Thompson, PhD, Matthew M. Zack, MD, Gloria L. Krahn, PhD, MPH, Willi Horner-Johnson, PhD, and Sonya E. Bowen, MSW
Affiliation: William W. Thompson, Matthew M. Zack, Gloria L. Krahn, Centers for Disease Control and Prevention, Atlanta, Georgia; Willi Horner-Johnson, Oregon Health and Science University, Portland, Oregon; Sonya E. Bowen, Centers for Medicare and Medicaid Services, Baltimore, Maryland.
Corresponding Author: John P. Barile, PhD, University of Hawai‘i at Mānoa, 2530 Dole St, Sakamaki Hall, C404, Honolulu, HI 96822. Telephone: 808-956-6271. E-mail: [email protected]
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Preventing Chronic Disease, Published online 2013 Sep 26. doi: 10.5888/pcd10.120282
Publication Year and Month: 2013 09

Abstract: Introduction
Understanding longitudinal relationships among multiple chronic conditions, limitations in activities of daily living, and health-related quality of life is important for identifying potential opportunities for health promotion and disease prevention among older adults.

Methods
This study assessed longitudinal associations between multiple chronic conditions and limitations in activities of daily living on health-related quality of life among older adults (≥65 years) from 2004 through 2006, using data from the Medicare Health Outcomes Survey (N = 27,334).

Results
Using a longitudinal path model, we found the numbers of chronic conditions at baseline and 2-year follow-up were independently associated with more limitations in activities of daily living at 2-year follow-up. In addition, more limitations in activities of daily living at 2-year follow-up were associated with worse health-related quality of life during the follow-up time period. The association between multiple chronic conditions and indices of health-related quality of life was mediated by changes in limitations in activities of daily living.

Conclusions: Both baseline and new multiple chronic conditions led to worse health in terms of activities of daily living and health-related quality of life and should be considered important outcomes to intervene on for improved long-term health. In addition, public health practitioners should consider addressing classes of multiple chronic conditions by using interventions designed to reduce the emergence of multiple chronic conditions, such as physical activity, reductions in smoking rates, and improved and coordinated access to health care services.

Outcome of Research: More research required

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Category: Quality of Life

Title: Perceived consequences of ageing with late effects of polio and strategies for managing daily life: a qualitative study
Author: Catharina Sjödahl Hammarlund, Jan Lexell and Christina Brogårdh
Affiliation: 1Department of Health Sciences, Lund University, Box 157, SE-221 00 Lund, Sweden
2The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad, Sweden
3Department of Neurology and Rehabilitation Medicine, Skåne University Hospital, Lund, Sweden
4Department of Health Science, Luleå University of Technology, Luleå, Sweden
Catharina Sjödahl Hammarlund, Phone: +46462228961,
Email: [email protected]_lhadojS.anirahtaC.
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Biomed Central Geriatrics 2017; 17: 179.
Publication Year and Month: 2017

Abstract: Background
New or increased impairments may develop several decades after an acute poliomyelitis infection. These new symptoms, commonly referred to as late effects of polio (LEoP), are characterised by muscular weakness and fatigue, generalised fatigue, pain at rest or during activities and cold intolerance. Growing older with LEoP may lead to increased activity limitations and participation restrictions, but there is limited knowledge of how these persons perceive the practical and psychological consequences of ageing with LEoP and what strategies they use in daily life. The aim of this qualitative study was therefore to explore how ageing people with LEoP perceive the their situation and what strategies they use for managing daily life.

Methods
Seven women and seven men (mean age 70 years) were interviewed. They all had a confirmed history of acute poliomyelitis and new impairments after a stable period of at least 15 years. Data were transcribed verbatim and analysed using systematic text condensation.

Results
The latent analysis resulted in three categories ‘Various consequences of ageing with LEoP’, ‘Limitations in everyday activities and participation restrictions’, and ‘Strategies for managing daily life when ageing with LEoP’ and 12 subcategories. The new impairments led to decreased physical and mental health. The participants perceived difficulties in performing everyday activities such as managing work, doing chores, partaking in recreational activities and participating in social events, thereby experiencing emotional and psychological distress. They managed to find strategies that mitigated their worries and upheld their self-confidence, for example finding practical solutions, making social comparisons, minimising, and avoidance.

Conclusions: Ageing with LEoP affected daily life to a great extent. The participants experienced considerable impact of the new and increased impairments on their life situation. Consequently, their ability to participate in various social activities also became restricted. Social comparisons and practical solutions are strategies that facilitate adaptation and acceptance of the new situation due to LEoP. This emphasises the need to design rehabilitation interventions that focus on coping, empowerment and self-management for people ageing with LEoP.

Outcome of Research: More research required

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Category: Quality of Life

Title: Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities
Author: Atwal A, Spiliotopoulou G, Coleman C, Harding K, Quirke C, Smith N, Osseiran Z, Plastow N, Wilson L
Affiliation: Division of Occupational Therapy, School of Health Sciences and Social Care, Brunel University, Uxbridge, UK
Journal: Health Expectations
Citation: Health Expect. 2014 Jan;doi:10.1111/hex.12152
Publication Year and Month: 2014 01

Abstract: INTRODUCTION: The term ‘post-polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.

AIM: To gain an in-depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.

METHOD: Six focus groups were conducted with 51 participants from two regions in England. Data were audio-taped and analysed using thematic analysis.

RESULTS: Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health-care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.

Conclusions: It is suggested that health-care professionals should consider factors which influence happiness and implement a person-centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health-care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.

Outcome of Research: More research required

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Category: Quality of Life

Title: Post-polio syndrome: impact of hope on quality of life
Author: Shiri S, Wexler ID, Feintuch U, Meiner Z, Schwartz I
Affiliation: Department of Physical and Medical Rehabilitation, Hadassah University Hospital, Mount Scopus, Jerusalem, Israel
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2012;34(10):824-30. doi: 10.3109/09638288.2011.623755. Epub 2011 Dec 10
Publication Year and Month: 2011 12

Abstract: PURPOSE: To determine the effect of future-oriented coping strategies on the quality of life (QOL) of individuals with post-polio syndrome (PPS).

METHODS: A correlative study, in which a cohort of 61 patients was surveyed and a group of 40 healthy, age-matched individuals served as controls. Patients were surveyed as to their QOL, levels of hope and utilization of proactive coping, employment status and degree of functionality.

RESULTS: PPS patients had lower total, physical and mental QOL indices compared to controls. Future-oriented coping strategies associated with hope were positively associated with physical and mental QOL in the PPS group, but not in the controls. In a multivariate analysis, hope and employment status predicted higher QOL among those with PPS.

Conclusions: Future-oriented coping strategies, particularly hope, are distinctively associated with improved QOL benefits in PPS patients. Fostering future-oriented coping related to hope may improve the self-perceived mental and physical status of patients with PPS.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Quality of life and health conditions reported from two post-polio clinics in Israel.
Author: Jacob T, Shapira A.
Affiliation: Physical Therapy Department, Ariel University Center of Samaria, Ariel, Israel. [email protected]
Journal: Journal of Rehabilitation Medicine
Citation: 2010 Apr;42(4):377-9
Publication Year and Month: 2010 04

Abstract: OBJECTIVE:
To evaluate the perceptions of health and quality of life among a group of polio survivors in Israel and to identify potential activities for improving their quality of life.

DESIGN:
An observational study.

SUBJECTS:
The sample consisted of 101 polio survivors who sought treatment at 2 post-polio clinics in Israel. The majority of participants were between the ages of 45 and 65 years, and approximately 25% were wheelchair-bound.

METHODS:
Participants were invited to attend a seminar, where they were invited to complete a questionnaire on demographic variables, mobility, perceptions of and satisfaction with health status and quality of life, and the potential contribution of 16 activities to improve their quality of life.

RESULTS:
Participants had low physical scores and normative mental scores. Mean scores on the Short-Form-12 questionnaire for physical and mental components were 32.9 and 50.3, respectively. Approximately 70% expressed the belief that exposure to up-to-date information about post-polio, as well as participation in social activities, might improve their quality of life.

Conclusions: Information about the physical and mental components of polio survivors, as well as the desire to partake in specific activities for polio survivors, may serve as a basis for the operations and prioritization of service providers.

Outcome of Research: More research required

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Category: Quality of Life

Title: Quality of life for post-polio syndrome: a patient derived, Rasch standard scale.
Author: Young CA, Quincey AC, Wong SM, Tennant A
Affiliation: Department of Neurology , Walton Centre NHS Trust , Lower Lane , Liverpool , UK.
ICF Unit , Swiss Paraplegic Research , Nottwil , Switzerland
Journal: Disability and Rehabilitation
Citation: 2018 Mar;40(5):597-602
Publication Year and Month: 2018 03

Abstract: OBJECTIVE:
To design a disease-specific quality of life (QoL) questionnaire for people with post-polio syndrome (PPS).

METHODS:
Qualitative interviews were conducted with 45 people with PPS to identify themes and derive potential items reflecting impact upon QoL. After cognitive debriefing, these were made into a questionnaire pack along with comparative questionnaires and posted to 319 patients. The 271 (85%) returned questionnaires were subjected to exploratory factor analysis (EFA) and Rasch analysis.

RESULTS:
A 25 item scale, the post-polio quality of life scale (PP-QoL), showed good fit to the Rasch model (conditional chi-square p = 0.156), unidimensionality (% t-tests 2.0: CI 0.7-3.8), and Cronbach's alpha of 0.87. With the latent estimate transformed to a 0-100 scale, the mean score was 56.9 (SD 18.5) with only 3.3% of respondents at the floor or ceiling of the scale. Test-retest reliability showed an intraclass correlation coefficient (ICC) (2.1) of 0.916, and correlation of 0.85.

Conclusions: CONCLUSION:
The disease-specific PP-QoL demonstrated excellent reliability, appropriate concurrent validity, and satisfied the standards of the Rasch model. It enables examination of the impact of health status upon perceived QoL, and the impact of rehabilitation interventions. The scale is freely available for academic or not-for-profit users to improve research in this neglected, disabling condition. Implications for Rehabilitation In post-polio syndrome (PPS), existing work examines aspects of health-related quality of life (HRQoL), such as activity limitations. A disease-specific QoL measure would enable researchers to model the impact of health status, such as fatigue or mobility restrictions, upon QoL in PPS. The post-polio quality of life scale (PP-QoL) is based on the patients' lived experience, meets Rasch standards and is free for use for academic and not-for-profit researchers. The raw score is reliable for individual use in clinical settings, and interval scale transformation is available for parametric applications and the calculation of change scores.

Outcome of Research: More research required

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Category: Quality of Life

Title: Quality of life in Swedish patients with post-polio syndrome with a focus on age and sex
Author: Jung TD (1), Broman L, Stibrant-Sunnerhagen K, Gonzalez H, Borg K
Affiliation: (1) Department of Clinical Sciences, Division of Rehabilitation Medicine, Karolinska Institutet, Danderyds Hospital, Stockholm; Institute for Neuroscience and Physiology, Section for Clinical Neuroscience and Rehabilitation, Göteborg University, Göteborg, Sweden; Department of Rehabilitation Medicine, Kyungpook National University Hospital, Daegu, South Korea
Journal: International Journal of Rehabilitation Research
Citation: Int J Rehabil Res. 2014 Jun;37(2):173-9. doi: 10.1097/MRR.0000000000000052
Publication Year and Month: 2014 06

Abstract: To investigate the health-related quality of life (QOL) in Swedish patients with post-polio syndrome (PPS), with a focus on sex and age. A total of 364 patients were recruited from five Swedish post-polio clinics. Analysis was carried out using SF-36 and data were compared with those of a normal population. QOL was significantly lower in PPS patients for all eight subdomains and the two main scores (physical compound score and mental compound score) when compared with the controls. Male patients had a significantly higher QOL than female patients for all subdomains and also for mental compound score and physical compound score, a phenomenon also observed in the normal population. There was a decrease in QOL in the physical domains and an increase in vitality with age. PPS decreases health-related QOL in both sexes, more in female patients. QOL for physical domains decreases whereas vitality increases with age in both sexes.

Conclusions:

Outcome of Research: Effective

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Category: Quality of Life

Title: Sleep Disorders in Neuromuscular Diseases
Author: Eric J Gartman
Affiliation: The Warren Alpert School of Medicine of Brown University Division of Pulmonary, Critical Care, and Sleep Medicine, Providence VA Medical Center,
Providence, RI, US
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: US Respiratory & Pulmonary Diseases. 2018;3(1):27–32
Publication Year and Month: 2018

Abstract: Disturbances in sleep are common in patients with neuromuscular diseases (NMDs) and are the source of a significant amount of morbidity.Underlying these disorders of sleep are the physiologic alterations that result from progressive changes in muscle strength, effective ventilation, and control of respiration. This review will discuss the normal changes that occur during sleep, how the physiologic alterations present in neuromuscular and chest wall disorders affect these normal processes, how to assess patients for the presence of sleep disorders, and how to approach treatment.

Conclusions:

Outcome of Research: More research required

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Category: Quality of Life

Title: Survey of the Late Effects of Polio in Lothian
Author: B. Pentland, D. J. Hellawell, J. Benjamin, R. Prasad
Affiliation: Rehabilitation Studies Unit
Journal: Rehabilitation Literature
Citation: Rehabilitation Studies Unit; January 1999
Publication Year and Month: 1999 01

Abstract: The Edinburgh Branch of the British Polio Fellowship (BPF) expressed the concern of members that the medical and related professions often appeared unfamiliar with the late consequences of polio and that services were not meeting their needs. In an attempt to determine the number of people affected and the nature of their experience, this postal survey was done in 1998.

A set of questionnaires were sent to 221 people, in Edinburgh and the Lothians, who had been identified as suffering polio in the past from those known to the BPF and hospital records. There were 125 replies which constituted the study population: 60% were female; the median age was 59 years; and the median time since original diagnosis was 51 years.

Common symptoms were: cold intolerance (70%); fatigue (66%); increased weakness in previously affected muscles (67%); new weakness in unaffected muscles (60%); muscle pain (64%); joint pain (61%); and joint stiffness (64%). These symptoms were often of recent onset. Other complaints included sleep disturbance (63%); exertional breathlessness (56%); headaches (33%); and swallowing difficulty (18%).

In terms of disability: 78% had difficulty with stairs; 72% with walking and 70% with bending. This was reflected in over a third reporting difficulty getting outdoors without help. Motor problems affecting upper limbs were present in over half the subjects. Daily activities were restricted because of severe pain in 38%. Over half (55%) the study population described difficulty living alone. The major factors restricting the lives of the subjects were physical problems, lack of energy and pain.

During the preceding 5 years, contact with health services were: hospital clinic 62%; physiotherapy 46%; occupational therapy 29%; speech therapy 2%; orthotics 40%; and wheelchair service 42%. The majority described satisfaction with these services but further study is warranted.

A conservative estimate is that there are about 300 people in Edinburgh and the Lothians with the range of difficulties demonstrated in this study and we suggest that special provision is made for them.

Conclusions: Half of the study population were under 59 years of age so that it would be incorrect to consider the population of people with post-polio symptoms as in the geriatric age group.
The commonest symptoms were cold intolerance, increased muscle weakness, muscle pain, fatigue and joint pain. It is particularly notable that these symptoms, with the exception of the first, were often of recent onset (i.e. within the last five years).
Pain is worthy of emphasis as a symptom, being commonly reported in the back and neck as well as in muscles and joints. It was also identified as a major source of limitation in daily activities.
Lower limb motor disabilities were extremely common with about 3/4 unable to walk a quarter of a mile or go up and down steps. Over 1/3 need help to leave their home or garden.
Motor disabilities of the upper limb were also common, affecting 1/3 to 1/2 of the population.
Physical disabilities, fatigue and pain are the principal causes of handicap in this population rather than mental or social factors.
Although those accessing health and related services generally reported them as satisfactory, there are no grounds for complacency and this area warrants further study.
The findings are similar to reports from England, the U.S.A and Scandinavia.
This study, although population based, was not designed to provide an accurate figure for the size of the post-polio population in Lothian. However, based on studies from other Western countries and our findings, we suggest that there may be approximately 1,500 polio survivors, at least 300 of whom are likely to experience significant health problems.

Outcome of Research:

Availability of Paper: The full text of this paper has been generously made available by the publisher.

Comments (if any): Paul Cavendish (Clinical Health Educator): There are multifactorial issues which require assistance from skilled health professionals / multi-disciplinary approach in the areas of pain management, physical therapy, orthotics and assistive aids

Link to Paper (if available): Click here to view full text or to download


Category: Quality of Life

Title: Surviving polio in a post-polio world
Author: Groce NE (1), Banks LM (2), Stein MA (3)
Affiliation: (1) Leonard Cheshire Disability and Inclusive Development Centre, University College London, London, UK; (2) London School of Hygiene and Tropical Medicine, London, UK; (3) Harvard Law School Project on Disability, Harvard Law School, Cambridge, USA
Journal: Social Science & Medicine
Citation: Social Science & Medicine. 2014 Apr;107;171-178
Publication Year and Month: 2014 04

Abstract: Excitement mounts as the global health and international development communities anticipate a polio-free world. Despite substantial political and logistical hurdles, only 223 cases of wild poliovirus in three countries were reported in 2012. Down 99% from the estimated 350,000 annual cases in 125 countries in 1988—this decline signals the imminent global eradication of polio.

However, elimination of new polio cases should not also signal an end to worldwide engagement with polio. As many as 20 million continue to live with the disabling consequences of the disease. In developed countries where polio immunization became universal after dissemination of the polio vaccine in the 1950s, almost all individuals who have had polio are now above age 50. But in many developing countries where polio vaccination campaigns reached large segments of the population only after 1988, millions disabled by polio are still children or young adults. Demographically, this group is also different. After three decades of immunization efforts, those children unvaccinated in the late 1980s were more likely to be from poorer rural and slum communities and to be girls—groups not only harder to reach than more affluent members of the population but also individuals who, if they contract polio, are less likely to have access to medical and rehabilitation programs or education, job training, employment and social support services.

The commitment to eradicate polio should not be considered complete while those living with the disabling sequelae of polio continue to live in poor health, poverty and social isolation. This paper reviews what is currently known about disabled survivors of polio and highlights areas of need in public health research, policy and programming. Based on a literature review, discussion and field observations, we identify continuing challenges posed by polio and argue that the attention, funding and commitment now being directed towards eradication be shifted to provide for the rehabilitative, medical, educational and social needs of those for whom the disabling sequelae of polio will remain a daily challenge for decades to come.

Conclusions:

Outcome of Research: Not applicable

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Category: Quality of Life

Title: The association between post-polio symptoms as measured by the Index of Post-Polio Sequelae and self-reported functional status
Author: Schwartz I, Gartsman I, Adler B, Friedlander Y, Manor O, Levine H, Meiner Z
Affiliation: Department of Physical Medicine and Rehabilitation, Hadassah Medical Center, Israel; The Hebrew University-Hadassah, Braun School of Public Health, Israel; Department of Physical Medicine and Rehabilitation, Hadassah Medical Center, Israel. Electronic address: [email protected]
Journal: Journal of the Neurological Sciences
Citation: J Neurol Sci. 2014 Oct 15;345(1-2):87-91. doi: 10.1016/j.jns.2014.07.012
Publication Year and Month: 2014 10

Abstract: OBJECTIVE: To evaluate the association between self-reported severity of polio sequelae and current functional status among polio survivors.

METHODS: This was a cross sectional study of 195 polio survivors attending a polio outpatient clinic at a university hospital. The main outcome measures of demographic, medical, social, and functional data were gleaned from a questionnaire adapted for the polio population. The severity of polio sequelae was evaluated with the self-reported Index of Post-Polio Sequelae (IPPS).

RESULTS: The mean age of our sample was 57.6 ± 10.5 years, 53% were men, 38% had acquired higher education and 37% were employed. We found significant correlations between the total IPPS score and independence in activity of daily living (P<0.05), the use of walking aids (P<0.005) and mobility in and out-of-doors (P<0.0001). A positive correlation was also found between the total IPPS score and subjective assessment of physical and mental health (P<0.0001).

Conclusions: Higher disability in ADL and mobility and lower perception of physical and mental health in polio survivors were associated with a higher score on the IPPS, reflecting greater severity of polio sequelae. These findings demonstrate the IPPS as a useful tool in the clinical evaluation of the polio population, however further data is needed in order to determine if this index can assess clinically significant changes over time.

Outcome of Research: More research required.

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Category: Quality of Life

Title: The health-related quality of life of patients suffering from the late effects of polio (post-polio).
Author: Kling C, Persson A, Gardulf A.
Affiliation: Department of Occupational Therapy, Department of Rehabilitation Medicine and The Nursing Care Research and Development Unit, Huddinge University Hospital, Stockholm, Sweden
Journal: Journal of Advanced Nursing
Citation: 2000;32(1):164-73.
Publication Year and Month: 2000 07

Abstract: In Sweden alone, there are today approximately 10 000-16 500 polio survivors. Between 60% and 80% experience new symptoms several years after the initial attack of poliomyelitis. The aims of this study were to investigate and describe the self-rated health-related quality of life and functional status of a group of Swedish patients with post-polio, to investigate whether any differences within the group could be related to demographic or disease-specific data and to compare the post-polio patients with individuals sampled from the general population. Data were obtained by using two questionnaires, the Swedish Health-Related Quality of Life Questionnaire (SWED-QUAL) and the Sickness Impact Profile (SIP). A total of 150 patients, 86 women and 64 men with median age 61 (20-82) years, were consecutively included. The study showed that the patients mainly reported that their physical, functional status was affected by their post-polio condition. Factors found to be associated with the physical, functional status were age and the number of parts of the body affected by the polio. On comparing the post-polio patients with two samples from the Swedish general population, it was found that the patients reported a poorer functional status and health-related quality of life. The women with post-polio reported more pain, as compared with both the men with post-polio and the women in the general population sample. The family life of the patients - in contrast to their physical abilities - did not seem to be affected by the new deteriorating condition. It is concluded that, owing to the wide range of symptoms, the patients with post-polio need care and support from multidisciplinary teams, including nurses and occupational therapists.

Conclusions:

Outcome of Research: More research required

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Category: Quality of Life

Title: The influence of post-polio syndrome on independence and life satisfaction
Author: Burger H (1), Marincek C
Affiliation: (1) Institute for Rehabilitation, Ljubljana, Slovenia
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2000 May 10;22(7):318-22
Publication Year and Month: 2000 10

Abstract: PURPOSE: The aim of the study was to find out the influence of the new symptoms on life satisfaction and independent living and the most frequent disabilities in patients with post-polio syndrome that are affecting the satisfaction and independence.

METHOD: A questionnaire was sent to all the post-polio survivors (207) who visited the Rehabilitation Institute in Ljubljana at least once in the last ten years. We got 100 answers, which were analysed by SPSS (statistical package for social sciences).

RESULTS: Sixty nine reported that they had new symptoms that may be classified as post-polio syndrome.

Conclusions: We have found that the new symptoms in post-polio survivors, which may be classified as post-polio syndrome, increased their walking and climbing stairs disability, increased their disability to perform daily activities and also decreased their satisfaction with life.

Outcome of Research: Not applicable

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There are currently 27 papers in this category.

Category: Quality of Life

Title: Disability and quality of life in individuals with postpolio syndrome.
Author: Ahlström G, Karlsson U.
Affiliation: Research and Development Unit, Psychiatry and Habilitation, Orebro Medical Centre Hospital, Sweden. [email protected]
Journal: Disability and Rehabilitation
Citation: 2000 Jun 15;22(9):416-22.
Publication Year and Month: 2000 06

Abstract: PURPOSE:
The purpose of the study is to investigate disability and quality of life in individuals with the characteristic symptoms of postpolio syndrome.

METHOD:
Disability is assessed by means of the self-report activities of daily living instrument, and quality of life by means of Kaasa's questionnaire and the quality of life profile.

RESULTS:
The 39 subjects have on average lived with polio sequelae for 52 years. Their main difficulties are with moving, lifting and carrying. This means restricted mobility, sedentary activities and a need to prioritize. Half of them feel that polio has lessened their possibilities in life, and a quarter have still not accepted the limitations polio has involved. Nevertheless the majority report a high level of psychosocial well-being, and almost a quarter say that living with polio has meant personal development and strength. We found a significant correlation between on the one hand disability with regard to ambulation, arm strength and finger strength on the self-report ADL, and on the other hand the number of negative problems on the quality of life profile (0.33-0.45).

Conclusions: The latter instrument needs further testing before its validity can be determined with certainty.

Outcome of Research: More research required

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Category: Quality of Life

Title: Growing older with post-polio syndrome:
Social and quality-of-life implications
Author: Andrea Duncan and Zinnia Batliwalla
Affiliation: 1Department of Occupational Science & Occupational Therapy, University
of Toronto, Toronto, ON, Canada
2March of Dimes Canada, Toronto, ON, Canada
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: SAGE Open Medicine
Volume 6: 1–7
Publication Year and Month: 2018 07

Abstract: Objectives: To understand the quality-of-life implications for post-polio syndrome survivors.
Methods: For this qualitative study, a focus group methodology, with a case study design, was used. The data were analyzed
for themes using a social ecological conceptual framework.
Results: Three focus groups were conducted with a total of 24 participants (N=24). Participants defined quality of life as
being able to engage in meaningful activities of daily living. Participants shared experiences of adapting to declining physical
health and embracing new activities of daily living. They expressed hope and shared stories that demonstrated resiliency.

Conclusions: The literature states that individuals aging with post-polio syndrome express concern that health providers
often know little about their disability condition. The participants in this study reflected this experience by sharing feelings of
misunderstanding from the medical community and expressing a desire to have more dynamic education for health providers.

Outcome of Research: More research required

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Category: Quality of Life

Title: Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities
Author: Atwal A, Spiliotopoulou G, Coleman C, Harding K, Quirke C, Smith N, Osseiran Z, Plastow N, Wilson L
Affiliation: Division of Occupational Therapy, School of Health Sciences and Social Care, Brunel University, Uxbridge, UK
Journal: Health Expectations
Citation: Health Expect. 2014 Jan;doi:10.1111/hex.12152
Publication Year and Month: 2014 01

Abstract: INTRODUCTION: The term ‘post-polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.

AIM: To gain an in-depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.

METHOD: Six focus groups were conducted with 51 participants from two regions in England. Data were audio-taped and analysed using thematic analysis.

RESULTS: Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health-care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.

Conclusions: It is suggested that health-care professionals should consider factors which influence happiness and implement a person-centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health-care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.

Outcome of Research: More research required

Availability of Paper: The full text of this paper has been generously made available by the publisher.

Comments (if any):

Link to Paper (if available): Click here to view full text or to download


Category: Quality of Life

Title: Survey of the Late Effects of Polio in Lothian
Author: B. Pentland, D. J. Hellawell, J. Benjamin, R. Prasad
Affiliation: Rehabilitation Studies Unit
Journal: Rehabilitation Literature
Citation: Rehabilitation Studies Unit; January 1999
Publication Year and Month: 1999 01

Abstract: The Edinburgh Branch of the British Polio Fellowship (BPF) expressed the concern of members that the medical and related professions often appeared unfamiliar with the late consequences of polio and that services were not meeting their needs. In an attempt to determine the number of people affected and the nature of their experience, this postal survey was done in 1998.

A set of questionnaires were sent to 221 people, in Edinburgh and the Lothians, who had been identified as suffering polio in the past from those known to the BPF and hospital records. There were 125 replies which constituted the study population: 60% were female; the median age was 59 years; and the median time since original diagnosis was 51 years.

Common symptoms were: cold intolerance (70%); fatigue (66%); increased weakness in previously affected muscles (67%); new weakness in unaffected muscles (60%); muscle pain (64%); joint pain (61%); and joint stiffness (64%). These symptoms were often of recent onset. Other complaints included sleep disturbance (63%); exertional breathlessness (56%); headaches (33%); and swallowing difficulty (18%).

In terms of disability: 78% had difficulty with stairs; 72% with walking and 70% with bending. This was reflected in over a third reporting difficulty getting outdoors without help. Motor problems affecting upper limbs were present in over half the subjects. Daily activities were restricted because of severe pain in 38%. Over half (55%) the study population described difficulty living alone. The major factors restricting the lives of the subjects were physical problems, lack of energy and pain.

During the preceding 5 years, contact with health services were: hospital clinic 62%; physiotherapy 46%; occupational therapy 29%; speech therapy 2%; orthotics 40%; and wheelchair service 42%. The majority described satisfaction with these services but further study is warranted.

A conservative estimate is that there are about 300 people in Edinburgh and the Lothians with the range of difficulties demonstrated in this study and we suggest that special provision is made for them.

Conclusions: Half of the study population were under 59 years of age so that it would be incorrect to consider the population of people with post-polio symptoms as in the geriatric age group.
The commonest symptoms were cold intolerance, increased muscle weakness, muscle pain, fatigue and joint pain. It is particularly notable that these symptoms, with the exception of the first, were often of recent onset (i.e. within the last five years).
Pain is worthy of emphasis as a symptom, being commonly reported in the back and neck as well as in muscles and joints. It was also identified as a major source of limitation in daily activities.
Lower limb motor disabilities were extremely common with about 3/4 unable to walk a quarter of a mile or go up and down steps. Over 1/3 need help to leave their home or garden.
Motor disabilities of the upper limb were also common, affecting 1/3 to 1/2 of the population.
Physical disabilities, fatigue and pain are the principal causes of handicap in this population rather than mental or social factors.
Although those accessing health and related services generally reported them as satisfactory, there are no grounds for complacency and this area warrants further study.
The findings are similar to reports from England, the U.S.A and Scandinavia.
This study, although population based, was not designed to provide an accurate figure for the size of the post-polio population in Lothian. However, based on studies from other Western countries and our findings, we suggest that there may be approximately 1,500 polio survivors, at least 300 of whom are likely to experience significant health problems.

Outcome of Research:

Availability of Paper: The full text of this paper has been generously made available by the publisher.

Comments (if any): Paul Cavendish (Clinical Health Educator): There are multifactorial issues which require assistance from skilled health professionals / multi-disciplinary approach in the areas of pain management, physical therapy, orthotics and assistive aids

Link to Paper (if available): Click here to view full text or to download


Category: Quality of Life

Title: The influence of post-polio syndrome on independence and life satisfaction
Author: Burger H (1), Marincek C
Affiliation: (1) Institute for Rehabilitation, Ljubljana, Slovenia
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2000 May 10;22(7):318-22
Publication Year and Month: 2000 10

Abstract: PURPOSE: The aim of the study was to find out the influence of the new symptoms on life satisfaction and independent living and the most frequent disabilities in patients with post-polio syndrome that are affecting the satisfaction and independence.

METHOD: A questionnaire was sent to all the post-polio survivors (207) who visited the Rehabilitation Institute in Ljubljana at least once in the last ten years. We got 100 answers, which were analysed by SPSS (statistical package for social sciences).

RESULTS: Sixty nine reported that they had new symptoms that may be classified as post-polio syndrome.

Conclusions: We have found that the new symptoms in post-polio survivors, which may be classified as post-polio syndrome, increased their walking and climbing stairs disability, increased their disability to perform daily activities and also decreased their satisfaction with life.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Perceived consequences of ageing with late effects of polio and strategies for managing daily life: a qualitative study
Author: Catharina Sjödahl Hammarlund, Jan Lexell and Christina Brogårdh
Affiliation: 1Department of Health Sciences, Lund University, Box 157, SE-221 00 Lund, Sweden
2The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad, Sweden
3Department of Neurology and Rehabilitation Medicine, Skåne University Hospital, Lund, Sweden
4Department of Health Science, Luleå University of Technology, Luleå, Sweden
Catharina Sjödahl Hammarlund, Phone: +46462228961,
Email: [email protected]_lhadojS.anirahtaC.
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Biomed Central Geriatrics 2017; 17: 179.
Publication Year and Month: 2017

Abstract: Background
New or increased impairments may develop several decades after an acute poliomyelitis infection. These new symptoms, commonly referred to as late effects of polio (LEoP), are characterised by muscular weakness and fatigue, generalised fatigue, pain at rest or during activities and cold intolerance. Growing older with LEoP may lead to increased activity limitations and participation restrictions, but there is limited knowledge of how these persons perceive the practical and psychological consequences of ageing with LEoP and what strategies they use in daily life. The aim of this qualitative study was therefore to explore how ageing people with LEoP perceive the their situation and what strategies they use for managing daily life.

Methods
Seven women and seven men (mean age 70 years) were interviewed. They all had a confirmed history of acute poliomyelitis and new impairments after a stable period of at least 15 years. Data were transcribed verbatim and analysed using systematic text condensation.

Results
The latent analysis resulted in three categories ‘Various consequences of ageing with LEoP’, ‘Limitations in everyday activities and participation restrictions’, and ‘Strategies for managing daily life when ageing with LEoP’ and 12 subcategories. The new impairments led to decreased physical and mental health. The participants perceived difficulties in performing everyday activities such as managing work, doing chores, partaking in recreational activities and participating in social events, thereby experiencing emotional and psychological distress. They managed to find strategies that mitigated their worries and upheld their self-confidence, for example finding practical solutions, making social comparisons, minimising, and avoidance.

Conclusions: Ageing with LEoP affected daily life to a great extent. The participants experienced considerable impact of the new and increased impairments on their life situation. Consequently, their ability to participate in various social activities also became restricted. Social comparisons and practical solutions are strategies that facilitate adaptation and acceptance of the new situation due to LEoP. This emphasises the need to design rehabilitation interventions that focus on coping, empowerment and self-management for people ageing with LEoP.

Outcome of Research: More research required

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Category: Quality of Life

Title: Sleep Disorders in Neuromuscular Diseases
Author: Eric J Gartman
Affiliation: The Warren Alpert School of Medicine of Brown University Division of Pulmonary, Critical Care, and Sleep Medicine, Providence VA Medical Center,
Providence, RI, US
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: US Respiratory & Pulmonary Diseases. 2018;3(1):27–32
Publication Year and Month: 2018

Abstract: Disturbances in sleep are common in patients with neuromuscular diseases (NMDs) and are the source of a significant amount of morbidity.Underlying these disorders of sleep are the physiologic alterations that result from progressive changes in muscle strength, effective ventilation, and control of respiration. This review will discuss the normal changes that occur during sleep, how the physiologic alterations present in neuromuscular and chest wall disorders affect these normal processes, how to assess patients for the presence of sleep disorders, and how to approach treatment.

Conclusions:

Outcome of Research: More research required

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Category: Quality of Life

Title: Surviving polio in a post-polio world
Author: Groce NE (1), Banks LM (2), Stein MA (3)
Affiliation: (1) Leonard Cheshire Disability and Inclusive Development Centre, University College London, London, UK; (2) London School of Hygiene and Tropical Medicine, London, UK; (3) Harvard Law School Project on Disability, Harvard Law School, Cambridge, USA
Journal: Social Science & Medicine
Citation: Social Science & Medicine. 2014 Apr;107;171-178
Publication Year and Month: 2014 04

Abstract: Excitement mounts as the global health and international development communities anticipate a polio-free world. Despite substantial political and logistical hurdles, only 223 cases of wild poliovirus in three countries were reported in 2012. Down 99% from the estimated 350,000 annual cases in 125 countries in 1988—this decline signals the imminent global eradication of polio.

However, elimination of new polio cases should not also signal an end to worldwide engagement with polio. As many as 20 million continue to live with the disabling consequences of the disease. In developed countries where polio immunization became universal after dissemination of the polio vaccine in the 1950s, almost all individuals who have had polio are now above age 50. But in many developing countries where polio vaccination campaigns reached large segments of the population only after 1988, millions disabled by polio are still children or young adults. Demographically, this group is also different. After three decades of immunization efforts, those children unvaccinated in the late 1980s were more likely to be from poorer rural and slum communities and to be girls—groups not only harder to reach than more affluent members of the population but also individuals who, if they contract polio, are less likely to have access to medical and rehabilitation programs or education, job training, employment and social support services.

The commitment to eradicate polio should not be considered complete while those living with the disabling sequelae of polio continue to live in poor health, poverty and social isolation. This paper reviews what is currently known about disabled survivors of polio and highlights areas of need in public health research, policy and programming. Based on a literature review, discussion and field observations, we identify continuing challenges posed by polio and argue that the attention, funding and commitment now being directed towards eradication be shifted to provide for the rehabilitative, medical, educational and social needs of those for whom the disabling sequelae of polio will remain a daily challenge for decades to come.

Conclusions:

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Life purpose: effect on functional decline and quality of life in polio survivors.
Author: Harrison TC, Stuifbergen AK.
Affiliation: School of Nursing, University of Texas-Austin, USA. [email protected]
Journal: Rehabilitation Nursing
Citation: 2006 Jul-Aug;31(4):149-54.
Publication Year and Month: 2006 07

Abstract: This article explores the protective effects that finding a purpose in life has on the level of physical and mental impairment and overall quality of life. Results were gathered from a national sample of 2,153 polio survivors. Although the combined social and physical experience of living with the disabling effects of polio has been associated with accelerated aging due to an increased allostatic load, finding a purpose in life may diminish these effects. The findings of this study indicate that purpose in life is associated with less perceived decline in health. Moreover, purpose in life is predictive of better quality of life despite levels of physical and mental impairment. Rehabilitation nurses should consider ways to help persons with polio maintain activities and interests that promote their sense of purpose in life.

Conclusions: Rehabilitation nurses should consider ways to help persons with polio maintain activities and interests that promote their sense of purpose in life.

Outcome of Research: More research required

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Category: Quality of Life

Title: Quality of life and health conditions reported from two post-polio clinics in Israel.
Author: Jacob T, Shapira A.
Affiliation: Physical Therapy Department, Ariel University Center of Samaria, Ariel, Israel. [email protected]
Journal: Journal of Rehabilitation Medicine
Citation: 2010 Apr;42(4):377-9
Publication Year and Month: 2010 04

Abstract: OBJECTIVE:
To evaluate the perceptions of health and quality of life among a group of polio survivors in Israel and to identify potential activities for improving their quality of life.

DESIGN:
An observational study.

SUBJECTS:
The sample consisted of 101 polio survivors who sought treatment at 2 post-polio clinics in Israel. The majority of participants were between the ages of 45 and 65 years, and approximately 25% were wheelchair-bound.

METHODS:
Participants were invited to attend a seminar, where they were invited to complete a questionnaire on demographic variables, mobility, perceptions of and satisfaction with health status and quality of life, and the potential contribution of 16 activities to improve their quality of life.

RESULTS:
Participants had low physical scores and normative mental scores. Mean scores on the Short-Form-12 questionnaire for physical and mental components were 32.9 and 50.3, respectively. Approximately 70% expressed the belief that exposure to up-to-date information about post-polio, as well as participation in social activities, might improve their quality of life.

Conclusions: Information about the physical and mental components of polio survivors, as well as the desire to partake in specific activities for polio survivors, may serve as a basis for the operations and prioritization of service providers.

Outcome of Research: More research required

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Category: Quality of Life

Title: Multiple Chronic Medical Conditions and Health-Related Quality of Life in Older Adults, 2004–2006
Author: John P. Barile, PhD,corresponding author William W. Thompson, PhD, Matthew M. Zack, MD, Gloria L. Krahn, PhD, MPH, Willi Horner-Johnson, PhD, and Sonya E. Bowen, MSW
Affiliation: William W. Thompson, Matthew M. Zack, Gloria L. Krahn, Centers for Disease Control and Prevention, Atlanta, Georgia; Willi Horner-Johnson, Oregon Health and Science University, Portland, Oregon; Sonya E. Bowen, Centers for Medicare and Medicaid Services, Baltimore, Maryland.
Corresponding Author: John P. Barile, PhD, University of Hawai‘i at Mānoa, 2530 Dole St, Sakamaki Hall, C404, Honolulu, HI 96822. Telephone: 808-956-6271. E-mail: [email protected]
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Preventing Chronic Disease, Published online 2013 Sep 26. doi: 10.5888/pcd10.120282
Publication Year and Month: 2013 09

Abstract: Introduction
Understanding longitudinal relationships among multiple chronic conditions, limitations in activities of daily living, and health-related quality of life is important for identifying potential opportunities for health promotion and disease prevention among older adults.

Methods
This study assessed longitudinal associations between multiple chronic conditions and limitations in activities of daily living on health-related quality of life among older adults (≥65 years) from 2004 through 2006, using data from the Medicare Health Outcomes Survey (N = 27,334).

Results
Using a longitudinal path model, we found the numbers of chronic conditions at baseline and 2-year follow-up were independently associated with more limitations in activities of daily living at 2-year follow-up. In addition, more limitations in activities of daily living at 2-year follow-up were associated with worse health-related quality of life during the follow-up time period. The association between multiple chronic conditions and indices of health-related quality of life was mediated by changes in limitations in activities of daily living.

Conclusions: Both baseline and new multiple chronic conditions led to worse health in terms of activities of daily living and health-related quality of life and should be considered important outcomes to intervene on for improved long-term health. In addition, public health practitioners should consider addressing classes of multiple chronic conditions by using interventions designed to reduce the emergence of multiple chronic conditions, such as physical activity, reductions in smoking rates, and improved and coordinated access to health care services.

Outcome of Research: More research required

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Category: Quality of Life

Title: Quality of life in Swedish patients with post-polio syndrome with a focus on age and sex
Author: Jung TD (1), Broman L, Stibrant-Sunnerhagen K, Gonzalez H, Borg K
Affiliation: (1) Department of Clinical Sciences, Division of Rehabilitation Medicine, Karolinska Institutet, Danderyds Hospital, Stockholm; Institute for Neuroscience and Physiology, Section for Clinical Neuroscience and Rehabilitation, Göteborg University, Göteborg, Sweden; Department of Rehabilitation Medicine, Kyungpook National University Hospital, Daegu, South Korea
Journal: International Journal of Rehabilitation Research
Citation: Int J Rehabil Res. 2014 Jun;37(2):173-9. doi: 10.1097/MRR.0000000000000052
Publication Year and Month: 2014 06

Abstract: To investigate the health-related quality of life (QOL) in Swedish patients with post-polio syndrome (PPS), with a focus on sex and age. A total of 364 patients were recruited from five Swedish post-polio clinics. Analysis was carried out using SF-36 and data were compared with those of a normal population. QOL was significantly lower in PPS patients for all eight subdomains and the two main scores (physical compound score and mental compound score) when compared with the controls. Male patients had a significantly higher QOL than female patients for all subdomains and also for mental compound score and physical compound score, a phenomenon also observed in the normal population. There was a decrease in QOL in the physical domains and an increase in vitality with age. PPS decreases health-related QOL in both sexes, more in female patients. QOL for physical domains decreases whereas vitality increases with age in both sexes.

Conclusions:

Outcome of Research: Effective

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Category: Quality of Life

Title: Depression and life satisfaction among people ageing with post-polio and spinal cord injury.
Author: Kemp BJ, Krause JS.
Affiliation: Rehabilitaion Research and Training Center On Aging With Spinal Cord Injury, Rancho Los Amigos Medical Center, Downey, CA 90242, USA.
Journal: Disability and Rehabilitation
Citation: 1999 May-Jun;21(5-6):241-9.
Publication Year and Month: 1999 05

Abstract: PURPOSE AND BACKGROUND:
Attention has recently begun to focus on the ageing of individuals with disability, not only as a long-term follow-up issue but as a unique developmental issue itself. The majority of individuals with an onset of disability before age 30 can now expect to live into their 60s, 70s and beyond. Most of the secondary medical conditions that foreshortened life expectancy have been controlled and improved rehabilitation techniques have evolved over the last 50 years. The average age of persons with post-polio in the United States is over 50 and the average age of persons with spinal cord injury is in the late 40s. New medical, functional and psychosocial problems have been discovered among persons ageing with these and other disabilities. Most of these problems lack sufficient scientific explanation, and therefore, clinical interventions. Quality of life (QOL) issues become involved as these changes occur. From a psychological perspective, QOL can be either positive, as reflected in high life satisfaction, or negative, as reflected in distress and depression.

METHODS:
This study reports on life satisfaction and depression in 360 persons, 121 with post-polio, 177 with SCI and 62 non-disabled age-matched comparisons. The Geriatric Depression Scale and the Older Adult Health and Mood Questionnaire assess depressive symptomatology and a 10-item life satisfaction scale with four-point ratings on each item used.

RESULTS:
Life satisfaction varied by the group, with the non-disabled group higher than one or both of the other two groups on all scales and the post-polio group higher than the SCI group on six scales. Satisfaction with health, finances, work and overall life were most different. 22% of the post-polio group, 41% of the SCI group and 15% of the non-disabled group had at least significant repressive symptomatology.

Conclusions: The results for each group are discussed in terms of their relation to other coping variables that were assessed, particularly social support and coping methods.

Outcome of Research: More research required

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Category: Quality of Life

Title: The health-related quality of life of patients suffering from the late effects of polio (post-polio).
Author: Kling C, Persson A, Gardulf A.
Affiliation: Department of Occupational Therapy, Department of Rehabilitation Medicine and The Nursing Care Research and Development Unit, Huddinge University Hospital, Stockholm, Sweden
Journal: Journal of Advanced Nursing
Citation: 2000;32(1):164-73.
Publication Year and Month: 2000 07

Abstract: In Sweden alone, there are today approximately 10 000-16 500 polio survivors. Between 60% and 80% experience new symptoms several years after the initial attack of poliomyelitis. The aims of this study were to investigate and describe the self-rated health-related quality of life and functional status of a group of Swedish patients with post-polio, to investigate whether any differences within the group could be related to demographic or disease-specific data and to compare the post-polio patients with individuals sampled from the general population. Data were obtained by using two questionnaires, the Swedish Health-Related Quality of Life Questionnaire (SWED-QUAL) and the Sickness Impact Profile (SIP). A total of 150 patients, 86 women and 64 men with median age 61 (20-82) years, were consecutively included. The study showed that the patients mainly reported that their physical, functional status was affected by their post-polio condition. Factors found to be associated with the physical, functional status were age and the number of parts of the body affected by the polio. On comparing the post-polio patients with two samples from the Swedish general population, it was found that the patients reported a poorer functional status and health-related quality of life. The women with post-polio reported more pain, as compared with both the men with post-polio and the women in the general population sample. The family life of the patients - in contrast to their physical abilities - did not seem to be affected by the new deteriorating condition. It is concluded that, owing to the wide range of symptoms, the patients with post-polio need care and support from multidisciplinary teams, including nurses and occupational therapists.

Conclusions:

Outcome of Research: More research required

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Category: Quality of Life

Title: Life satisfaction and self-reported impairments in persons with late effects of polio.
Author: Lexell J, Brogårdh C.
Affiliation: Department of Health Sciences, Lund University, 22100 Lund, Sweden. [email protected]
Journal: Annals of Physical and Rehabilitation Medicine
Citation: Volume 55, Issues 9–10, December 2012, Pages 577-589
Publication Year and Month: 2012 12

Abstract: Objective
Decades after an acute poliomyelitis infection many persons experience new symptoms or impairments which may affect their life satisfaction. The objective of this study was to investigate the association between life satisfaction and self-reported impairments in persons with late effects of polio.

Material and methods
One hundred and sixty-nine persons (104 women and 65 men) with prior polio responded on admission to rehabilitation to the Life Satisfaction Questionnaire (LiSat-11) assessing satisfaction with life as a whole and 10 domains of life satisfaction and to a 13-item questionnaire assessing self-reported impairments related to late effects of polio.

Results
A majority was to some degree satisfied with life as a whole and with all 10 domains of life satisfaction in LiSat-11, but less than 20% was very satisfied or satisfied with their somatic health. Muscle fatigue, muscle weakness, general fatigue, muscle and/or joint pain during physical activity and cold intolerance were the most frequently reported impairments. Overall, those who rated themselves as not satisfied (according to LiSat-11) reported significantly higher degrees of impairment than those who were satisfied. The relationships between the items of life satisfaction in LiSat-11 and the items in the self-report questionnaire varied from −0.01 to −0.64.

Conclusions: Satisfaction with life as a whole, and different domains of life satisfaction are low to moderately associated with self-reported impairments. This implies that rehabilitation interventions must address not only self-reported impairments but also activity limitations and participation restrictions in order to enhance life satisfaction in people with late effects of polio.

Outcome of Research: More research required

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Category: Quality of Life

Title: Life satisfaction in persons with late effects of polio. Applied Research in Quality of Life
Author: Lund ML, Lexell J.
Affiliation: Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden. [email protected]
Journal: Disability and Rehabilitation
Citation: 2009;31(19):1592-7.
Publication Year and Month: 2009 09

Abstract: PURPOSE:
To assess the relationship between participation and problems with participation in life situations, and life satisfaction in persons with late effects of polio.

METHODS:
One hundred fifty-eight persons with late effects of polio responded to a postal questionnaire including the Swedish versions of the Impact on Participation and Autonomy Questionnaire (IPA-S) and Life Satisfaction Questionnaire (LiSat-11).

RESULTS:
The persons' perceived participation in the five domains of participation in the IPA-S was significantly correlated with their satisfaction with life as a whole and with most of the 10 domains of life satisfaction. Significant differences in satisfaction with life as a whole and with eight of the 10 domains in LiSat-11 were found between groups of increasing severe problems with participation. Greater number of reports of severe problems with participation corresponded with gradually decreased satisfaction with life as a whole and with satisfaction in the eight domains in LiSat-11.

Conclusions: Perceived participation and problems with participation in life situations are determinants of life satisfaction in persons with late effects of polio. This implies that addressing participation and problems with participation in the rehabilitation of persons with late effects of polio may lead to an enhanced life satisfaction.

Outcome of Research: More research required

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Category: Quality of Life

Title: Long-term socio-economic consequences and health care costs of poliomyelitis: a historical cohort study involving 3606 polio patients.
Author: Nielsen NM, Kay L, Wanscher B, Ibsen R, Kjellberg J, Jennum P.
Affiliation: 1 Department of Epidemiology Research, Statens Serum Institut, Artillerivej 5, 2300, Copenhagen S, Denmark. [email protected]
2 The PTU Rehabilitation Centre, Fjeldhammervej 8, 2610, Rødovre, Denmark.
3 Danish Center for Sleep Medicine, Department of Clinical Neurophysiology, Center for Healthy Ageing, Faculty of Health Sciences, University of Copenhagen, Glostrup Hospital, Copenhagen, Denmark.
4 Danish Institute for Local and Regional Government Research, Copenhagen, Denmark.
Journal: Journal of the Neurological Sciences
Citation: 2016 Jun;263(6):1120-8.
Publication Year and Month: 2016 06

Abstract: Worldwide 10-20 million individuals are living with disabilities after acute poliomyelitis. However, very little is known about the socio-economic consequences and health care costs of poliomyelitis. We carried out a historical register-based study including 3606 individuals hospitalised for poliomyelitis in Copenhagen, Denmark 1940-1954, and 13,795 age and gender-matched Danes. Participants were followed from 1980 until 2012, and family, socio-economic conditions and health care costs were evaluated in different age groups using chi-squared tests, boot-strapped t tests or hazard ratios (HR) calculated in Cox-regression models. The analyses were performed separately for paralytic and non-paralytic polio survivors and their controls, respectively. Compared with controls a higher percentage of paralytic polio survivors remained childless, whereas no difference was observed for non-paralytic polio survivors. The educational level among paralytic as well as non-paralytic polio survivors was higher than that among their controls, employment rate at the ages of 40, 50 and 60 years was slightly lower, whereas total income in the age intervals of 31-40, 41-50 and 51-60 years were similar to controls. Paralytic and non-paralytic polio survivors had a 2.5 [HR = 2.52 (95 % confidence interval (CI); 2.29-2.77)] and 1.4 [HR = 1.35 (95 % CI; 1.23-1.49)]-fold higher risk, respectively, of receiving disability pension compared with controls. Personal health care costs were considerably higher in all age groups in both groups of polio survivors. Individuals with a history of poliomyelitis are well educated, have a slightly lower employment rate, an income similar to controls, but a considerably higher cost in the health care system.

Conclusions: Individuals with a history of poliomyelitis are well educated, have a slightly lower employment rate, an income similar to controls, but a considerably higher cost in the health care system.

Outcome of Research: More research required

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Category: Quality of Life

Title: Impact of post-polio-related fatigue on quality of life
Author: On AY, Oncu J, Atamaz F, Durmaz B
Affiliation: Department of Physical Medicine and Rehabilitation, Ege University Medical School, Izmir, Turkey
Journal: Journal of Rehabilitation Medicine
Citation: J Rehabil Med. 2006 Sep;38(5):329-32
Publication Year and Month: 2006 09

Abstract: OBJECTIVE: To assess the impact of post-polio-related fatigue on quality of life.

DESIGN: Cross-sectional case control study.

SUBJECTS: Patients without additional health problems that may induce fatigue were selected from among 82 polio survivors. Twenty-six patients with post-polio syndrome and 10 without post-polio syndrome were included. Control group consisted of 30 healthy volunteers.

METHODS: We assessed presence and severity of fatigue by Fatigue Severity Scale, quality of life by Nottingham Health Profile, and impact of fatigue on quality of life by Fatigue Impact Scale. Leg muscle strength was measured by manual muscle testing.

RESULTS: Strength of leg muscles showed no differences between the patients with and without post-polio syndrome. Patients with post-polio syndrome reported significantly higher levels of fatigue and reduced quality of life compared with both patients without post-polio syndrome and control group. Fatigue Impact Scale revealed that fatigue did not significantly impair mental health, but had a negative impact especially on physical and psychosocial functioning of the patients with post-polio syndrome.

Conclusions: Post-polio-related fatigue seems to be an important factor for further impairment of quality of life in polio survivors.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: FACTORS ASSOCIATED WITH QOL OF POLIO SURVIVORS IN JAPAN
Author: Satoru SAEKI and Kenji HACHISUKA
Affiliation: Department of Rehabilitation Medicine, University of Occupational and Environmental Health.
Moji Medical Center, Kitakyushu, Japan
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: JJOMT 54 (2006): 84-90.
Publication Year and Month: 2006 02

Abstract: Objectives: To examine the association of impairments and functional disabilities with health-related quality of life (QOL) of polio survivors in Japan.
Design: Cross-sectional survey.
Settings: Post-polio clinic at a university hospital.
Participants: Polio survivors (N=39) with mild muscle weakness living in the community who voluntarily participated in a health examination for post-polio syndrome.
Interventions: Not applicable.
Main Outcome Measures: The Medical Outcome Study 36-Item Short-Form (SF-36).
Results: Mean score on the physical component scale (43.0) of the SF-36 was lower than that of the mental component scale (52.2), and the vitality subscale for men was higher than that for women. Multivariate analyses identified that the physical dimension of the SF-36 was affected by muscle weakness, while the mental dimension of the SF-36 was affected by personal care activities.

Conclusions: Conclusions: Polio survivors with reduced physical functioning may maintain the mental aspect of QOL using their previous coping strategies to fight functional limitations. Coping with new health problems and adapting to the environment should be examined from not only the physical but also the mental viewpoint of QOL for polio survivors.

Outcome of Research: More research required

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Category: Quality of Life

Title: The association between post-polio symptoms as measured by the Index of Post-Polio Sequelae and self-reported functional status
Author: Schwartz I, Gartsman I, Adler B, Friedlander Y, Manor O, Levine H, Meiner Z
Affiliation: Department of Physical Medicine and Rehabilitation, Hadassah Medical Center, Israel; The Hebrew University-Hadassah, Braun School of Public Health, Israel; Department of Physical Medicine and Rehabilitation, Hadassah Medical Center, Israel. Electronic address: [email protected]
Journal: Journal of the Neurological Sciences
Citation: J Neurol Sci. 2014 Oct 15;345(1-2):87-91. doi: 10.1016/j.jns.2014.07.012
Publication Year and Month: 2014 10

Abstract: OBJECTIVE: To evaluate the association between self-reported severity of polio sequelae and current functional status among polio survivors.

METHODS: This was a cross sectional study of 195 polio survivors attending a polio outpatient clinic at a university hospital. The main outcome measures of demographic, medical, social, and functional data were gleaned from a questionnaire adapted for the polio population. The severity of polio sequelae was evaluated with the self-reported Index of Post-Polio Sequelae (IPPS).

RESULTS: The mean age of our sample was 57.6 ± 10.5 years, 53% were men, 38% had acquired higher education and 37% were employed. We found significant correlations between the total IPPS score and independence in activity of daily living (P<0.05), the use of walking aids (P<0.005) and mobility in and out-of-doors (P<0.0001). A positive correlation was also found between the total IPPS score and subjective assessment of physical and mental health (P<0.0001).

Conclusions: Higher disability in ADL and mobility and lower perception of physical and mental health in polio survivors were associated with a higher score on the IPPS, reflecting greater severity of polio sequelae. These findings demonstrate the IPPS as a useful tool in the clinical evaluation of the polio population, however further data is needed in order to determine if this index can assess clinically significant changes over time.

Outcome of Research: More research required.

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Category: Quality of Life

Title: Post-polio syndrome: impact of hope on quality of life
Author: Shiri S, Wexler ID, Feintuch U, Meiner Z, Schwartz I
Affiliation: Department of Physical and Medical Rehabilitation, Hadassah University Hospital, Mount Scopus, Jerusalem, Israel
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2012;34(10):824-30. doi: 10.3109/09638288.2011.623755. Epub 2011 Dec 10
Publication Year and Month: 2011 12

Abstract: PURPOSE: To determine the effect of future-oriented coping strategies on the quality of life (QOL) of individuals with post-polio syndrome (PPS).

METHODS: A correlative study, in which a cohort of 61 patients was surveyed and a group of 40 healthy, age-matched individuals served as controls. Patients were surveyed as to their QOL, levels of hope and utilization of proactive coping, employment status and degree of functionality.

RESULTS: PPS patients had lower total, physical and mental QOL indices compared to controls. Future-oriented coping strategies associated with hope were positively associated with physical and mental QOL in the PPS group, but not in the controls. In a multivariate analysis, hope and employment status predicted higher QOL among those with PPS.

Conclusions: Future-oriented coping strategies, particularly hope, are distinctively associated with improved QOL benefits in PPS patients. Fostering future-oriented coping related to hope may improve the self-perceived mental and physical status of patients with PPS.

Outcome of Research: Not applicable

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Category: Assistive Technology, Quality of Life

Title: Assistive technology and prediction of happiness in people with post-polio syndrome
Author: Spiliotopoulou G, Fowkes C, Atwal A
Affiliation: Brunel University, School of Health Sciences and Social Care , Uxbridge, UB8 3PH , UK
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil Assist Technol. 2012 May;7(3):199-204. doi: 10.3109/17483107.2011.616921. Epub 2011 Oct 6
Publication Year and Month: 2012 05

Abstract: PURPOSE: To explore the relationship between level of happiness in people with post-polio syndrome (PPS) and assistive technology (AT) by taking into account confounding factors such as age, gender and house composition.

METHOD: Existing data from 218 adults with PPS, who had completed a cross-sectional survey conducted by the British Polio Fellowship in 2007, were used for a secondary quantitative analysis. Ordinal logistic regression was applied to determine whether ownership of or the need for AT predicted happiness in people with PPS.

RESULTS: Ownership of AT did not predict happiness, whereas the perceived need for AT was a significant predictor of feeling less happy (p = 0.028). Among the different types of AT needed, only need of home adaptations combined with major equipment was close to being significantly associated with less happiness (p = 0.078). Being older (p < 0.001) and living with a partner (p < 0.001) significantly increased the likelihood of feeling happier.

Conclusions: The findings indicate the importance of the contribution of need for AT in explaining happiness in people with PPS. The fact that users reported unmet equipment needs urge for increased user decision making and better understanding of why perceived needs are not resolved.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: An explanatory model of health promotion and quality of life for persons with post-polio syndrome.
Author: Stuifbergen AK, Seraphine A, Harrison T, Adachi E.
Affiliation: School of Nursing, The University of Texas at Austin, 1700 Red River, Austin, TX 78701, USA. [email protected]
Journal: Social Science & Medicine
Citation: 2005 Jan;60(2):383-93.
Publication Year and Month: 2005 01

Abstract: Although previous studies have examined selected factors influencing health promoting behaviors or quality of life, the complex interplay of these variables in persons with different chronic disabling conditions has not been investigated. This study tested an explanatory model of variables influencing health promotion and quality of life originally developed with a sample of persons with multiple sclerosis in a new sample of persons living with post-polio syndrome (PPS) in the USA. The sample of 1603 persons with PPS (1123 females, 478 males and 2 unknown) completed a battery of instruments including measures of severity of polio-related impairment, barriers to health promoting behaviors, resources, self-efficacy, acceptance, health promoting behaviors and perceived quality of life. A model originally developed in a sample of 786 persons with multiple sclerosis was assessed and modified using the weighted least squares procedure (WLS) which is implemented by LISREL8. The structural equation analyses resulted in a proper solution that exhibited adequate fit: chi2 (8, N = 1549)=84.22, p<0.05; GFI=0.96, IFI=0.90, CFI=0.90. The antecedent variables accounted for 65% of the variance in the frequency of health promoting behaviors and 53% of the variance in perceived quality of life. The model test supports the hypothesis that quality of life is the outcome of a complex interplay between contextual factors (severity of impairment), antecedent variables, and health promoting behaviors. It also suggests that the relationships among these variables are similar in samples of persons with two different chronic conditions. Further research using a qualitative approach is needed to clarify other contributors to quality of life in persons with post-polio syndrome.

Conclusions:

Outcome of Research: More research required

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Category: Pain, Quality of Life

Title: Impact of pain on quality of life in patients with post-polio syndrome
Author: Werhagen L, Borg K
Affiliation: Division of Rehabilitation Medicine, Department of Clinical Sciences, Karolinska Institutet Danderyd Hospital, Stockholm, Sweden
Journal: Journal of Rehabilitation Medicine
Citation: J Rehabil Med. 2013; 45: 161–163. doi: 10.2340/16501977-1096
Publication Year and Month: 2013 00

Abstract: OBJECTIVE: Post-polio syndrome is a neurological disorder occurring several years after an acute polio infection. The main symptoms are increased muscular weakness and atrophy, fatigue and pain. Pain is present more often in younger individuals and in females and, according to the visual analogue scale (VAS), the intensity of pain is relatively high. The aim of the present study was to analyse the impact of pain on quality of life in patients with post-polio syndrome.

DESIGN: Transversal study.

PATIENTS AND METHODS: Patients with post-polio syndrome underwent a thorough neurological and general examination. They were interviewed about the presence and intensity of pain during the previous 3 months, then completed the quality of life inventory Short-Form 36 (SF-36), which included questions about pain during the previous 4 weeks, and rated their pain intensity during the previous 24 h according to the VAS.

RESULTS: Seventy-seven of the patients (68%) experienced pain at the examination. Pain was found to have a significant impact on the SF-36 subdomains Vitality and General health. A correlation was found between pain during the previous 3 months, the previous 4 weeks, and the previous 24 h.

DISCUSSION: Pain is common in patients with post-polio syndrome. Although patients have a high mean VAS score the pain only affects quality of life for Vitality and General Health, but not for other physical and mental domains.

Conclusions:

Outcome of Research: Not applicable.

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Category: Quality of Life

Title: Factors associated with reduced quality of life in polio survivors in Korea
Author: Yang EJ (1), Lee SY (2), Kim K (3), Jung SH (4), Jang S-N (5), Han SJ (6), Kim W-H (7), Lim J-Y (1)
Affiliation: (1) Department of Rehabilitation Medicine, Seoul National University Bundang Hospital, Seongnam, Republic of Korea; (2) Department of Physical Medicine and Rehabilitation, Soonchunhyang University Bucheon Hospital, Gyeonggi, Republic of Korea; (3) Department of Rehabilitation Medicine, Seoul National University Hospital, Seoul, Republic of Korea; (4) Department of Rehabilitation Medicine, Seoul National University Boramae Medical Center, Seoul, Republic of Korea; (5) Red Cross College of Nursing, Chung-Ang University, Seoul, Republic of Korea; (6) Department of Rehabilitation Medicine, Ewha Womans University Medical Center Seoul, Republic of Korea; (7) Department of Rehabilitation Medicine, National Rehabilitation Center, Seoul, Republic of Korea; Xi'an Jiaotong University School of Medicine, China
Journal: Public Library of Science
Citation: PLoS One. 2015; 10(6): e0130448. doi: 10.1371/journal.pone.0130448
Publication Year and Month: 2015 06

Abstract: The purpose of this study is to assess health-related quality of life in polio survivors (PS) compared with that in the general population in Korea. Polio survivors (n = 120) from outpatient clinics at two hospitals, healthy controls (HC, n = 121) and members of the general population with activity limitations (AL, n = 121) recruited through a proportional-allocation, systematic sampling strategy from the Fourth Korean National Health and Nutrition Examination Survey were surveyed with self-rated health-related quality of life (Euro QoL five-dimensions). The proportion of participants who reported problems in mobility, usual activity, and symptoms of anxiety/depression were higher in the PS group compared with the HC and AL groups. There was no significant difference in the self-care dimension across the groups. Polio-specific questionnaire, pain, depression, fatigue, Modified Barthel Index (K-MBI) and Short Physical Performance Battery (SPPB) were assessed in the PS group. Those with post-poliomyelitis syndrome had greater problems in mobility, usual activity, and depression/anxiety. Polio survivors, especially those with more pain and fatigue symptoms, and those who did not have access to medical services had poorer health-related quality of life. These findings afford useful information for potential intervention improving quality of life in polio survivors.

Conclusions: In conclusion, the QoL of polio survivors is worse than that of the general population in terms of physical and functional status. Polio survivors experienced greater restriction in mobility and activity, greater pain, and greater depression/anxiety compared with controls, although there was no difference in the self-care domain. To improve the HRQoL of polio survivors, we need to provide better rehabilitation services.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Health related quality of life in Turkish polio survivors: impact of post-polio on the health related quality of life in terms of functional status, severity of pain, fatigue, and social, and emotional functioning
Author: Yesim Garip (1), Filiz Eser (2), Hatice Bodur (2), Bedriye Baskan (2), Filiz Sivas (2), Ozlem Yilmaz (2)
Affiliation: (1) Department of Physical Medicine and Rehabilitation, Ankara Basak Medical Center, Ankara, Turkey; (2) Department of Physical Medicine and Rehabilitation, Ankara Numune Training and Research Hospital, Ankara, Turkey
Journal: Brazilian Journal of Rheumatology (Revista Brasileira de Reumatologia)
Citation: Rev Bras Reumatol. 2015 Mar; dx.doi.org/10.1016/j.rbre.2014.12.006
Publication Year and Month: 2015 03

Abstract: OBJECTIVE: To determine the impact of postpolio-syndrome on quality of life in polio survivors.

METHODS: Forty polio survivors were included in the study. Twenty-one patients fulfilling the Halstead's postpolio-syndrome criteria participated in postpolio-syndrome group. The remaining nineteen patients formed non-postpolio-syndrome group. Control group was composed of forty healthy subjects. Quality of life was evaluated by Nottingham Health Profile, depression by Beck Depression Scale and fatigue by Fatigue Symptom Inventory. Isometric muscle strength was measured by manual muscle testing.

RESULTS: Total manual muscle testing score was 26.19 ± 13.24 (median: 29) in postpolio-syndrome group and 30.08 ± 8.9 (median: 32) in non-postpolio-syndrome group. Total manual muscle testing scores of non-postpolio-syndrome group were significantly higher than that of postpolio-syndrome group. Patients with postpolio-syndrome reported significantly higher levels of fatigue and reduced quality of life in terms of physical mobility, pain and energy when compared with patients without postpolio-syndrome and control group. It was not reported a statistically significant difference in social and emotional functioning and sleep quality between postpolio-syndrome, non-postpolio-syndrome and control groups. Also it was not found any statistically significant difference in Beck Depression Scale scores among the groups.

Conclusions: Postpolio-syndrome has a negative impact on quality of life in terms of functional status, severity of pain and energy. The identification, early recognition and rehabilitation of postpolio-syndrome patients may result in an improvement in their quality of life.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Quality of life for post-polio syndrome: a patient derived, Rasch standard scale.
Author: Young CA, Quincey AC, Wong SM, Tennant A
Affiliation: Department of Neurology , Walton Centre NHS Trust , Lower Lane , Liverpool , UK.
ICF Unit , Swiss Paraplegic Research , Nottwil , Switzerland
Journal: Disability and Rehabilitation
Citation: 2018 Mar;40(5):597-602
Publication Year and Month: 2018 03

Abstract: OBJECTIVE:
To design a disease-specific quality of life (QoL) questionnaire for people with post-polio syndrome (PPS).

METHODS:
Qualitative interviews were conducted with 45 people with PPS to identify themes and derive potential items reflecting impact upon QoL. After cognitive debriefing, these were made into a questionnaire pack along with comparative questionnaires and posted to 319 patients. The 271 (85%) returned questionnaires were subjected to exploratory factor analysis (EFA) and Rasch analysis.

RESULTS:
A 25 item scale, the post-polio quality of life scale (PP-QoL), showed good fit to the Rasch model (conditional chi-square p = 0.156), unidimensionality (% t-tests 2.0: CI 0.7-3.8), and Cronbach's alpha of 0.87. With the latent estimate transformed to a 0-100 scale, the mean score was 56.9 (SD 18.5) with only 3.3% of respondents at the floor or ceiling of the scale. Test-retest reliability showed an intraclass correlation coefficient (ICC) (2.1) of 0.916, and correlation of 0.85.

Conclusions: CONCLUSION:
The disease-specific PP-QoL demonstrated excellent reliability, appropriate concurrent validity, and satisfied the standards of the Rasch model. It enables examination of the impact of health status upon perceived QoL, and the impact of rehabilitation interventions. The scale is freely available for academic or not-for-profit users to improve research in this neglected, disabling condition. Implications for Rehabilitation In post-polio syndrome (PPS), existing work examines aspects of health-related quality of life (HRQoL), such as activity limitations. A disease-specific QoL measure would enable researchers to model the impact of health status, such as fatigue or mobility restrictions, upon QoL in PPS. The post-polio quality of life scale (PP-QoL) is based on the patients' lived experience, meets Rasch standards and is free for use for academic and not-for-profit researchers. The raw score is reliable for individual use in clinical settings, and interval scale transformation is available for parametric applications and the calculation of change scores.

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There are currently 27 papers in this category.

Category: Quality of Life

Title: Life satisfaction and self-reported impairments in persons with late effects of polio.
Author: Lexell J, Brogårdh C.
Affiliation: Department of Health Sciences, Lund University, 22100 Lund, Sweden. [email protected]
Journal: Annals of Physical and Rehabilitation Medicine
Citation: Volume 55, Issues 9–10, December 2012, Pages 577-589
Publication Year and Month: 2012 12

Abstract: Objective
Decades after an acute poliomyelitis infection many persons experience new symptoms or impairments which may affect their life satisfaction. The objective of this study was to investigate the association between life satisfaction and self-reported impairments in persons with late effects of polio.

Material and methods
One hundred and sixty-nine persons (104 women and 65 men) with prior polio responded on admission to rehabilitation to the Life Satisfaction Questionnaire (LiSat-11) assessing satisfaction with life as a whole and 10 domains of life satisfaction and to a 13-item questionnaire assessing self-reported impairments related to late effects of polio.

Results
A majority was to some degree satisfied with life as a whole and with all 10 domains of life satisfaction in LiSat-11, but less than 20% was very satisfied or satisfied with their somatic health. Muscle fatigue, muscle weakness, general fatigue, muscle and/or joint pain during physical activity and cold intolerance were the most frequently reported impairments. Overall, those who rated themselves as not satisfied (according to LiSat-11) reported significantly higher degrees of impairment than those who were satisfied. The relationships between the items of life satisfaction in LiSat-11 and the items in the self-report questionnaire varied from −0.01 to −0.64.

Conclusions: Satisfaction with life as a whole, and different domains of life satisfaction are low to moderately associated with self-reported impairments. This implies that rehabilitation interventions must address not only self-reported impairments but also activity limitations and participation restrictions in order to enhance life satisfaction in people with late effects of polio.

Outcome of Research: More research required

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Category: Quality of Life

Title: Health related quality of life in Turkish polio survivors: impact of post-polio on the health related quality of life in terms of functional status, severity of pain, fatigue, and social, and emotional functioning
Author: Yesim Garip (1), Filiz Eser (2), Hatice Bodur (2), Bedriye Baskan (2), Filiz Sivas (2), Ozlem Yilmaz (2)
Affiliation: (1) Department of Physical Medicine and Rehabilitation, Ankara Basak Medical Center, Ankara, Turkey; (2) Department of Physical Medicine and Rehabilitation, Ankara Numune Training and Research Hospital, Ankara, Turkey
Journal: Brazilian Journal of Rheumatology (Revista Brasileira de Reumatologia)
Citation: Rev Bras Reumatol. 2015 Mar; dx.doi.org/10.1016/j.rbre.2014.12.006
Publication Year and Month: 2015 03

Abstract: OBJECTIVE: To determine the impact of postpolio-syndrome on quality of life in polio survivors.

METHODS: Forty polio survivors were included in the study. Twenty-one patients fulfilling the Halstead's postpolio-syndrome criteria participated in postpolio-syndrome group. The remaining nineteen patients formed non-postpolio-syndrome group. Control group was composed of forty healthy subjects. Quality of life was evaluated by Nottingham Health Profile, depression by Beck Depression Scale and fatigue by Fatigue Symptom Inventory. Isometric muscle strength was measured by manual muscle testing.

RESULTS: Total manual muscle testing score was 26.19 ± 13.24 (median: 29) in postpolio-syndrome group and 30.08 ± 8.9 (median: 32) in non-postpolio-syndrome group. Total manual muscle testing scores of non-postpolio-syndrome group were significantly higher than that of postpolio-syndrome group. Patients with postpolio-syndrome reported significantly higher levels of fatigue and reduced quality of life in terms of physical mobility, pain and energy when compared with patients without postpolio-syndrome and control group. It was not reported a statistically significant difference in social and emotional functioning and sleep quality between postpolio-syndrome, non-postpolio-syndrome and control groups. Also it was not found any statistically significant difference in Beck Depression Scale scores among the groups.

Conclusions: Postpolio-syndrome has a negative impact on quality of life in terms of functional status, severity of pain and energy. The identification, early recognition and rehabilitation of postpolio-syndrome patients may result in an improvement in their quality of life.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Post-polio syndrome: impact of hope on quality of life
Author: Shiri S, Wexler ID, Feintuch U, Meiner Z, Schwartz I
Affiliation: Department of Physical and Medical Rehabilitation, Hadassah University Hospital, Mount Scopus, Jerusalem, Israel
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2012;34(10):824-30. doi: 10.3109/09638288.2011.623755. Epub 2011 Dec 10
Publication Year and Month: 2011 12

Abstract: PURPOSE: To determine the effect of future-oriented coping strategies on the quality of life (QOL) of individuals with post-polio syndrome (PPS).

METHODS: A correlative study, in which a cohort of 61 patients was surveyed and a group of 40 healthy, age-matched individuals served as controls. Patients were surveyed as to their QOL, levels of hope and utilization of proactive coping, employment status and degree of functionality.

RESULTS: PPS patients had lower total, physical and mental QOL indices compared to controls. Future-oriented coping strategies associated with hope were positively associated with physical and mental QOL in the PPS group, but not in the controls. In a multivariate analysis, hope and employment status predicted higher QOL among those with PPS.

Conclusions: Future-oriented coping strategies, particularly hope, are distinctively associated with improved QOL benefits in PPS patients. Fostering future-oriented coping related to hope may improve the self-perceived mental and physical status of patients with PPS.

Outcome of Research: Not applicable

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Category: Assistive Technology, Quality of Life

Title: Assistive technology and prediction of happiness in people with post-polio syndrome
Author: Spiliotopoulou G, Fowkes C, Atwal A
Affiliation: Brunel University, School of Health Sciences and Social Care , Uxbridge, UB8 3PH , UK
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil Assist Technol. 2012 May;7(3):199-204. doi: 10.3109/17483107.2011.616921. Epub 2011 Oct 6
Publication Year and Month: 2012 05

Abstract: PURPOSE: To explore the relationship between level of happiness in people with post-polio syndrome (PPS) and assistive technology (AT) by taking into account confounding factors such as age, gender and house composition.

METHOD: Existing data from 218 adults with PPS, who had completed a cross-sectional survey conducted by the British Polio Fellowship in 2007, were used for a secondary quantitative analysis. Ordinal logistic regression was applied to determine whether ownership of or the need for AT predicted happiness in people with PPS.

RESULTS: Ownership of AT did not predict happiness, whereas the perceived need for AT was a significant predictor of feeling less happy (p = 0.028). Among the different types of AT needed, only need of home adaptations combined with major equipment was close to being significantly associated with less happiness (p = 0.078). Being older (p < 0.001) and living with a partner (p < 0.001) significantly increased the likelihood of feeling happier.

Conclusions: The findings indicate the importance of the contribution of need for AT in explaining happiness in people with PPS. The fact that users reported unmet equipment needs urge for increased user decision making and better understanding of why perceived needs are not resolved.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: The influence of post-polio syndrome on independence and life satisfaction
Author: Burger H (1), Marincek C
Affiliation: (1) Institute for Rehabilitation, Ljubljana, Slovenia
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2000 May 10;22(7):318-22
Publication Year and Month: 2000 10

Abstract: PURPOSE: The aim of the study was to find out the influence of the new symptoms on life satisfaction and independent living and the most frequent disabilities in patients with post-polio syndrome that are affecting the satisfaction and independence.

METHOD: A questionnaire was sent to all the post-polio survivors (207) who visited the Rehabilitation Institute in Ljubljana at least once in the last ten years. We got 100 answers, which were analysed by SPSS (statistical package for social sciences).

RESULTS: Sixty nine reported that they had new symptoms that may be classified as post-polio syndrome.

Conclusions: We have found that the new symptoms in post-polio survivors, which may be classified as post-polio syndrome, increased their walking and climbing stairs disability, increased their disability to perform daily activities and also decreased their satisfaction with life.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Quality of life for post-polio syndrome: a patient derived, Rasch standard scale.
Author: Young CA, Quincey AC, Wong SM, Tennant A
Affiliation: Department of Neurology , Walton Centre NHS Trust , Lower Lane , Liverpool , UK.
ICF Unit , Swiss Paraplegic Research , Nottwil , Switzerland
Journal: Disability and Rehabilitation
Citation: 2018 Mar;40(5):597-602
Publication Year and Month: 2018 03

Abstract: OBJECTIVE:
To design a disease-specific quality of life (QoL) questionnaire for people with post-polio syndrome (PPS).

METHODS:
Qualitative interviews were conducted with 45 people with PPS to identify themes and derive potential items reflecting impact upon QoL. After cognitive debriefing, these were made into a questionnaire pack along with comparative questionnaires and posted to 319 patients. The 271 (85%) returned questionnaires were subjected to exploratory factor analysis (EFA) and Rasch analysis.

RESULTS:
A 25 item scale, the post-polio quality of life scale (PP-QoL), showed good fit to the Rasch model (conditional chi-square p = 0.156), unidimensionality (% t-tests 2.0: CI 0.7-3.8), and Cronbach's alpha of 0.87. With the latent estimate transformed to a 0-100 scale, the mean score was 56.9 (SD 18.5) with only 3.3% of respondents at the floor or ceiling of the scale. Test-retest reliability showed an intraclass correlation coefficient (ICC) (2.1) of 0.916, and correlation of 0.85.

Conclusions: CONCLUSION:
The disease-specific PP-QoL demonstrated excellent reliability, appropriate concurrent validity, and satisfied the standards of the Rasch model. It enables examination of the impact of health status upon perceived QoL, and the impact of rehabilitation interventions. The scale is freely available for academic or not-for-profit users to improve research in this neglected, disabling condition. Implications for Rehabilitation In post-polio syndrome (PPS), existing work examines aspects of health-related quality of life (HRQoL), such as activity limitations. A disease-specific QoL measure would enable researchers to model the impact of health status, such as fatigue or mobility restrictions, upon QoL in PPS. The post-polio quality of life scale (PP-QoL) is based on the patients' lived experience, meets Rasch standards and is free for use for academic and not-for-profit researchers. The raw score is reliable for individual use in clinical settings, and interval scale transformation is available for parametric applications and the calculation of change scores.

Outcome of Research: More research required

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Category: Quality of Life

Title: Disability and quality of life in individuals with postpolio syndrome.
Author: Ahlström G, Karlsson U.
Affiliation: Research and Development Unit, Psychiatry and Habilitation, Orebro Medical Centre Hospital, Sweden. [email protected]
Journal: Disability and Rehabilitation
Citation: 2000 Jun 15;22(9):416-22.
Publication Year and Month: 2000 06

Abstract: PURPOSE:
The purpose of the study is to investigate disability and quality of life in individuals with the characteristic symptoms of postpolio syndrome.

METHOD:
Disability is assessed by means of the self-report activities of daily living instrument, and quality of life by means of Kaasa's questionnaire and the quality of life profile.

RESULTS:
The 39 subjects have on average lived with polio sequelae for 52 years. Their main difficulties are with moving, lifting and carrying. This means restricted mobility, sedentary activities and a need to prioritize. Half of them feel that polio has lessened their possibilities in life, and a quarter have still not accepted the limitations polio has involved. Nevertheless the majority report a high level of psychosocial well-being, and almost a quarter say that living with polio has meant personal development and strength. We found a significant correlation between on the one hand disability with regard to ambulation, arm strength and finger strength on the self-report ADL, and on the other hand the number of negative problems on the quality of life profile (0.33-0.45).

Conclusions: The latter instrument needs further testing before its validity can be determined with certainty.

Outcome of Research: More research required

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Category: Quality of Life

Title: Life satisfaction in persons with late effects of polio. Applied Research in Quality of Life
Author: Lund ML, Lexell J.
Affiliation: Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden. [email protected]
Journal: Disability and Rehabilitation
Citation: 2009;31(19):1592-7.
Publication Year and Month: 2009 09

Abstract: PURPOSE:
To assess the relationship between participation and problems with participation in life situations, and life satisfaction in persons with late effects of polio.

METHODS:
One hundred fifty-eight persons with late effects of polio responded to a postal questionnaire including the Swedish versions of the Impact on Participation and Autonomy Questionnaire (IPA-S) and Life Satisfaction Questionnaire (LiSat-11).

RESULTS:
The persons' perceived participation in the five domains of participation in the IPA-S was significantly correlated with their satisfaction with life as a whole and with most of the 10 domains of life satisfaction. Significant differences in satisfaction with life as a whole and with eight of the 10 domains in LiSat-11 were found between groups of increasing severe problems with participation. Greater number of reports of severe problems with participation corresponded with gradually decreased satisfaction with life as a whole and with satisfaction in the eight domains in LiSat-11.

Conclusions: Perceived participation and problems with participation in life situations are determinants of life satisfaction in persons with late effects of polio. This implies that addressing participation and problems with participation in the rehabilitation of persons with late effects of polio may lead to an enhanced life satisfaction.

Outcome of Research: More research required

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Category: Quality of Life

Title: Depression and life satisfaction among people ageing with post-polio and spinal cord injury.
Author: Kemp BJ, Krause JS.
Affiliation: Rehabilitaion Research and Training Center On Aging With Spinal Cord Injury, Rancho Los Amigos Medical Center, Downey, CA 90242, USA.
Journal: Disability and Rehabilitation
Citation: 1999 May-Jun;21(5-6):241-9.
Publication Year and Month: 1999 05

Abstract: PURPOSE AND BACKGROUND:
Attention has recently begun to focus on the ageing of individuals with disability, not only as a long-term follow-up issue but as a unique developmental issue itself. The majority of individuals with an onset of disability before age 30 can now expect to live into their 60s, 70s and beyond. Most of the secondary medical conditions that foreshortened life expectancy have been controlled and improved rehabilitation techniques have evolved over the last 50 years. The average age of persons with post-polio in the United States is over 50 and the average age of persons with spinal cord injury is in the late 40s. New medical, functional and psychosocial problems have been discovered among persons ageing with these and other disabilities. Most of these problems lack sufficient scientific explanation, and therefore, clinical interventions. Quality of life (QOL) issues become involved as these changes occur. From a psychological perspective, QOL can be either positive, as reflected in high life satisfaction, or negative, as reflected in distress and depression.

METHODS:
This study reports on life satisfaction and depression in 360 persons, 121 with post-polio, 177 with SCI and 62 non-disabled age-matched comparisons. The Geriatric Depression Scale and the Older Adult Health and Mood Questionnaire assess depressive symptomatology and a 10-item life satisfaction scale with four-point ratings on each item used.

RESULTS:
Life satisfaction varied by the group, with the non-disabled group higher than one or both of the other two groups on all scales and the post-polio group higher than the SCI group on six scales. Satisfaction with health, finances, work and overall life were most different. 22% of the post-polio group, 41% of the SCI group and 15% of the non-disabled group had at least significant repressive symptomatology.

Conclusions: The results for each group are discussed in terms of their relation to other coping variables that were assessed, particularly social support and coping methods.

Outcome of Research: More research required

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Category: Quality of Life

Title: Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities
Author: Atwal A, Spiliotopoulou G, Coleman C, Harding K, Quirke C, Smith N, Osseiran Z, Plastow N, Wilson L
Affiliation: Division of Occupational Therapy, School of Health Sciences and Social Care, Brunel University, Uxbridge, UK
Journal: Health Expectations
Citation: Health Expect. 2014 Jan;doi:10.1111/hex.12152
Publication Year and Month: 2014 01

Abstract: INTRODUCTION: The term ‘post-polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.

AIM: To gain an in-depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.

METHOD: Six focus groups were conducted with 51 participants from two regions in England. Data were audio-taped and analysed using thematic analysis.

RESULTS: Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health-care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.

Conclusions: It is suggested that health-care professionals should consider factors which influence happiness and implement a person-centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health-care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.

Outcome of Research: More research required

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Category: Quality of Life

Title: Quality of life in Swedish patients with post-polio syndrome with a focus on age and sex
Author: Jung TD (1), Broman L, Stibrant-Sunnerhagen K, Gonzalez H, Borg K
Affiliation: (1) Department of Clinical Sciences, Division of Rehabilitation Medicine, Karolinska Institutet, Danderyds Hospital, Stockholm; Institute for Neuroscience and Physiology, Section for Clinical Neuroscience and Rehabilitation, Göteborg University, Göteborg, Sweden; Department of Rehabilitation Medicine, Kyungpook National University Hospital, Daegu, South Korea
Journal: International Journal of Rehabilitation Research
Citation: Int J Rehabil Res. 2014 Jun;37(2):173-9. doi: 10.1097/MRR.0000000000000052
Publication Year and Month: 2014 06

Abstract: To investigate the health-related quality of life (QOL) in Swedish patients with post-polio syndrome (PPS), with a focus on sex and age. A total of 364 patients were recruited from five Swedish post-polio clinics. Analysis was carried out using SF-36 and data were compared with those of a normal population. QOL was significantly lower in PPS patients for all eight subdomains and the two main scores (physical compound score and mental compound score) when compared with the controls. Male patients had a significantly higher QOL than female patients for all subdomains and also for mental compound score and physical compound score, a phenomenon also observed in the normal population. There was a decrease in QOL in the physical domains and an increase in vitality with age. PPS decreases health-related QOL in both sexes, more in female patients. QOL for physical domains decreases whereas vitality increases with age in both sexes.

Conclusions:

Outcome of Research: Effective

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Category: Quality of Life

Title: The health-related quality of life of patients suffering from the late effects of polio (post-polio).
Author: Kling C, Persson A, Gardulf A.
Affiliation: Department of Occupational Therapy, Department of Rehabilitation Medicine and The Nursing Care Research and Development Unit, Huddinge University Hospital, Stockholm, Sweden
Journal: Journal of Advanced Nursing
Citation: 2000;32(1):164-73.
Publication Year and Month: 2000 07

Abstract: In Sweden alone, there are today approximately 10 000-16 500 polio survivors. Between 60% and 80% experience new symptoms several years after the initial attack of poliomyelitis. The aims of this study were to investigate and describe the self-rated health-related quality of life and functional status of a group of Swedish patients with post-polio, to investigate whether any differences within the group could be related to demographic or disease-specific data and to compare the post-polio patients with individuals sampled from the general population. Data were obtained by using two questionnaires, the Swedish Health-Related Quality of Life Questionnaire (SWED-QUAL) and the Sickness Impact Profile (SIP). A total of 150 patients, 86 women and 64 men with median age 61 (20-82) years, were consecutively included. The study showed that the patients mainly reported that their physical, functional status was affected by their post-polio condition. Factors found to be associated with the physical, functional status were age and the number of parts of the body affected by the polio. On comparing the post-polio patients with two samples from the Swedish general population, it was found that the patients reported a poorer functional status and health-related quality of life. The women with post-polio reported more pain, as compared with both the men with post-polio and the women in the general population sample. The family life of the patients - in contrast to their physical abilities - did not seem to be affected by the new deteriorating condition. It is concluded that, owing to the wide range of symptoms, the patients with post-polio need care and support from multidisciplinary teams, including nurses and occupational therapists.

Conclusions:

Outcome of Research: More research required

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Category: Pain, Quality of Life

Title: Impact of pain on quality of life in patients with post-polio syndrome
Author: Werhagen L, Borg K
Affiliation: Division of Rehabilitation Medicine, Department of Clinical Sciences, Karolinska Institutet Danderyd Hospital, Stockholm, Sweden
Journal: Journal of Rehabilitation Medicine
Citation: J Rehabil Med. 2013; 45: 161–163. doi: 10.2340/16501977-1096
Publication Year and Month: 2013 00

Abstract: OBJECTIVE: Post-polio syndrome is a neurological disorder occurring several years after an acute polio infection. The main symptoms are increased muscular weakness and atrophy, fatigue and pain. Pain is present more often in younger individuals and in females and, according to the visual analogue scale (VAS), the intensity of pain is relatively high. The aim of the present study was to analyse the impact of pain on quality of life in patients with post-polio syndrome.

DESIGN: Transversal study.

PATIENTS AND METHODS: Patients with post-polio syndrome underwent a thorough neurological and general examination. They were interviewed about the presence and intensity of pain during the previous 3 months, then completed the quality of life inventory Short-Form 36 (SF-36), which included questions about pain during the previous 4 weeks, and rated their pain intensity during the previous 24 h according to the VAS.

RESULTS: Seventy-seven of the patients (68%) experienced pain at the examination. Pain was found to have a significant impact on the SF-36 subdomains Vitality and General health. A correlation was found between pain during the previous 3 months, the previous 4 weeks, and the previous 24 h.

DISCUSSION: Pain is common in patients with post-polio syndrome. Although patients have a high mean VAS score the pain only affects quality of life for Vitality and General Health, but not for other physical and mental domains.

Conclusions:

Outcome of Research: Not applicable.

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Category: Quality of Life

Title: Impact of post-polio-related fatigue on quality of life
Author: On AY, Oncu J, Atamaz F, Durmaz B
Affiliation: Department of Physical Medicine and Rehabilitation, Ege University Medical School, Izmir, Turkey
Journal: Journal of Rehabilitation Medicine
Citation: J Rehabil Med. 2006 Sep;38(5):329-32
Publication Year and Month: 2006 09

Abstract: OBJECTIVE: To assess the impact of post-polio-related fatigue on quality of life.

DESIGN: Cross-sectional case control study.

SUBJECTS: Patients without additional health problems that may induce fatigue were selected from among 82 polio survivors. Twenty-six patients with post-polio syndrome and 10 without post-polio syndrome were included. Control group consisted of 30 healthy volunteers.

METHODS: We assessed presence and severity of fatigue by Fatigue Severity Scale, quality of life by Nottingham Health Profile, and impact of fatigue on quality of life by Fatigue Impact Scale. Leg muscle strength was measured by manual muscle testing.

RESULTS: Strength of leg muscles showed no differences between the patients with and without post-polio syndrome. Patients with post-polio syndrome reported significantly higher levels of fatigue and reduced quality of life compared with both patients without post-polio syndrome and control group. Fatigue Impact Scale revealed that fatigue did not significantly impair mental health, but had a negative impact especially on physical and psychosocial functioning of the patients with post-polio syndrome.

Conclusions: Post-polio-related fatigue seems to be an important factor for further impairment of quality of life in polio survivors.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Quality of life and health conditions reported from two post-polio clinics in Israel.
Author: Jacob T, Shapira A.
Affiliation: Physical Therapy Department, Ariel University Center of Samaria, Ariel, Israel. [email protected]
Journal: Journal of Rehabilitation Medicine
Citation: 2010 Apr;42(4):377-9
Publication Year and Month: 2010 04

Abstract: OBJECTIVE:
To evaluate the perceptions of health and quality of life among a group of polio survivors in Israel and to identify potential activities for improving their quality of life.

DESIGN:
An observational study.

SUBJECTS:
The sample consisted of 101 polio survivors who sought treatment at 2 post-polio clinics in Israel. The majority of participants were between the ages of 45 and 65 years, and approximately 25% were wheelchair-bound.

METHODS:
Participants were invited to attend a seminar, where they were invited to complete a questionnaire on demographic variables, mobility, perceptions of and satisfaction with health status and quality of life, and the potential contribution of 16 activities to improve their quality of life.

RESULTS:
Participants had low physical scores and normative mental scores. Mean scores on the Short-Form-12 questionnaire for physical and mental components were 32.9 and 50.3, respectively. Approximately 70% expressed the belief that exposure to up-to-date information about post-polio, as well as participation in social activities, might improve their quality of life.

Conclusions: Information about the physical and mental components of polio survivors, as well as the desire to partake in specific activities for polio survivors, may serve as a basis for the operations and prioritization of service providers.

Outcome of Research: More research required

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Category: Quality of Life

Title: The association between post-polio symptoms as measured by the Index of Post-Polio Sequelae and self-reported functional status
Author: Schwartz I, Gartsman I, Adler B, Friedlander Y, Manor O, Levine H, Meiner Z
Affiliation: Department of Physical Medicine and Rehabilitation, Hadassah Medical Center, Israel; The Hebrew University-Hadassah, Braun School of Public Health, Israel; Department of Physical Medicine and Rehabilitation, Hadassah Medical Center, Israel. Electronic address: [email protected]
Journal: Journal of the Neurological Sciences
Citation: J Neurol Sci. 2014 Oct 15;345(1-2):87-91. doi: 10.1016/j.jns.2014.07.012
Publication Year and Month: 2014 10

Abstract: OBJECTIVE: To evaluate the association between self-reported severity of polio sequelae and current functional status among polio survivors.

METHODS: This was a cross sectional study of 195 polio survivors attending a polio outpatient clinic at a university hospital. The main outcome measures of demographic, medical, social, and functional data were gleaned from a questionnaire adapted for the polio population. The severity of polio sequelae was evaluated with the self-reported Index of Post-Polio Sequelae (IPPS).

RESULTS: The mean age of our sample was 57.6 ± 10.5 years, 53% were men, 38% had acquired higher education and 37% were employed. We found significant correlations between the total IPPS score and independence in activity of daily living (P<0.05), the use of walking aids (P<0.005) and mobility in and out-of-doors (P<0.0001). A positive correlation was also found between the total IPPS score and subjective assessment of physical and mental health (P<0.0001).

Conclusions: Higher disability in ADL and mobility and lower perception of physical and mental health in polio survivors were associated with a higher score on the IPPS, reflecting greater severity of polio sequelae. These findings demonstrate the IPPS as a useful tool in the clinical evaluation of the polio population, however further data is needed in order to determine if this index can assess clinically significant changes over time.

Outcome of Research: More research required.

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Category: Quality of Life

Title: Long-term socio-economic consequences and health care costs of poliomyelitis: a historical cohort study involving 3606 polio patients.
Author: Nielsen NM, Kay L, Wanscher B, Ibsen R, Kjellberg J, Jennum P.
Affiliation: 1 Department of Epidemiology Research, Statens Serum Institut, Artillerivej 5, 2300, Copenhagen S, Denmark. [email protected]
2 The PTU Rehabilitation Centre, Fjeldhammervej 8, 2610, Rødovre, Denmark.
3 Danish Center for Sleep Medicine, Department of Clinical Neurophysiology, Center for Healthy Ageing, Faculty of Health Sciences, University of Copenhagen, Glostrup Hospital, Copenhagen, Denmark.
4 Danish Institute for Local and Regional Government Research, Copenhagen, Denmark.
Journal: Journal of the Neurological Sciences
Citation: 2016 Jun;263(6):1120-8.
Publication Year and Month: 2016 06

Abstract: Worldwide 10-20 million individuals are living with disabilities after acute poliomyelitis. However, very little is known about the socio-economic consequences and health care costs of poliomyelitis. We carried out a historical register-based study including 3606 individuals hospitalised for poliomyelitis in Copenhagen, Denmark 1940-1954, and 13,795 age and gender-matched Danes. Participants were followed from 1980 until 2012, and family, socio-economic conditions and health care costs were evaluated in different age groups using chi-squared tests, boot-strapped t tests or hazard ratios (HR) calculated in Cox-regression models. The analyses were performed separately for paralytic and non-paralytic polio survivors and their controls, respectively. Compared with controls a higher percentage of paralytic polio survivors remained childless, whereas no difference was observed for non-paralytic polio survivors. The educational level among paralytic as well as non-paralytic polio survivors was higher than that among their controls, employment rate at the ages of 40, 50 and 60 years was slightly lower, whereas total income in the age intervals of 31-40, 41-50 and 51-60 years were similar to controls. Paralytic and non-paralytic polio survivors had a 2.5 [HR = 2.52 (95 % confidence interval (CI); 2.29-2.77)] and 1.4 [HR = 1.35 (95 % CI; 1.23-1.49)]-fold higher risk, respectively, of receiving disability pension compared with controls. Personal health care costs were considerably higher in all age groups in both groups of polio survivors. Individuals with a history of poliomyelitis are well educated, have a slightly lower employment rate, an income similar to controls, but a considerably higher cost in the health care system.

Conclusions: Individuals with a history of poliomyelitis are well educated, have a slightly lower employment rate, an income similar to controls, but a considerably higher cost in the health care system.

Outcome of Research: More research required

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Category: Quality of Life

Title: Growing older with post-polio syndrome:
Social and quality-of-life implications
Author: Andrea Duncan and Zinnia Batliwalla
Affiliation: 1Department of Occupational Science & Occupational Therapy, University
of Toronto, Toronto, ON, Canada
2March of Dimes Canada, Toronto, ON, Canada
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: SAGE Open Medicine
Volume 6: 1–7
Publication Year and Month: 2018 07

Abstract: Objectives: To understand the quality-of-life implications for post-polio syndrome survivors.
Methods: For this qualitative study, a focus group methodology, with a case study design, was used. The data were analyzed
for themes using a social ecological conceptual framework.
Results: Three focus groups were conducted with a total of 24 participants (N=24). Participants defined quality of life as
being able to engage in meaningful activities of daily living. Participants shared experiences of adapting to declining physical
health and embracing new activities of daily living. They expressed hope and shared stories that demonstrated resiliency.

Conclusions: The literature states that individuals aging with post-polio syndrome express concern that health providers
often know little about their disability condition. The participants in this study reflected this experience by sharing feelings of
misunderstanding from the medical community and expressing a desire to have more dynamic education for health providers.

Outcome of Research: More research required

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Category: Quality of Life

Title: Sleep Disorders in Neuromuscular Diseases
Author: Eric J Gartman
Affiliation: The Warren Alpert School of Medicine of Brown University Division of Pulmonary, Critical Care, and Sleep Medicine, Providence VA Medical Center,
Providence, RI, US
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: US Respiratory & Pulmonary Diseases. 2018;3(1):27–32
Publication Year and Month: 2018

Abstract: Disturbances in sleep are common in patients with neuromuscular diseases (NMDs) and are the source of a significant amount of morbidity.Underlying these disorders of sleep are the physiologic alterations that result from progressive changes in muscle strength, effective ventilation, and control of respiration. This review will discuss the normal changes that occur during sleep, how the physiologic alterations present in neuromuscular and chest wall disorders affect these normal processes, how to assess patients for the presence of sleep disorders, and how to approach treatment.

Conclusions:

Outcome of Research: More research required

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Category: Quality of Life

Title: Multiple Chronic Medical Conditions and Health-Related Quality of Life in Older Adults, 2004–2006
Author: John P. Barile, PhD,corresponding author William W. Thompson, PhD, Matthew M. Zack, MD, Gloria L. Krahn, PhD, MPH, Willi Horner-Johnson, PhD, and Sonya E. Bowen, MSW
Affiliation: William W. Thompson, Matthew M. Zack, Gloria L. Krahn, Centers for Disease Control and Prevention, Atlanta, Georgia; Willi Horner-Johnson, Oregon Health and Science University, Portland, Oregon; Sonya E. Bowen, Centers for Medicare and Medicaid Services, Baltimore, Maryland.
Corresponding Author: John P. Barile, PhD, University of Hawai‘i at Mānoa, 2530 Dole St, Sakamaki Hall, C404, Honolulu, HI 96822. Telephone: 808-956-6271. E-mail: [email protected]
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Preventing Chronic Disease, Published online 2013 Sep 26. doi: 10.5888/pcd10.120282
Publication Year and Month: 2013 09

Abstract: Introduction
Understanding longitudinal relationships among multiple chronic conditions, limitations in activities of daily living, and health-related quality of life is important for identifying potential opportunities for health promotion and disease prevention among older adults.

Methods
This study assessed longitudinal associations between multiple chronic conditions and limitations in activities of daily living on health-related quality of life among older adults (≥65 years) from 2004 through 2006, using data from the Medicare Health Outcomes Survey (N = 27,334).

Results
Using a longitudinal path model, we found the numbers of chronic conditions at baseline and 2-year follow-up were independently associated with more limitations in activities of daily living at 2-year follow-up. In addition, more limitations in activities of daily living at 2-year follow-up were associated with worse health-related quality of life during the follow-up time period. The association between multiple chronic conditions and indices of health-related quality of life was mediated by changes in limitations in activities of daily living.

Conclusions: Both baseline and new multiple chronic conditions led to worse health in terms of activities of daily living and health-related quality of life and should be considered important outcomes to intervene on for improved long-term health. In addition, public health practitioners should consider addressing classes of multiple chronic conditions by using interventions designed to reduce the emergence of multiple chronic conditions, such as physical activity, reductions in smoking rates, and improved and coordinated access to health care services.

Outcome of Research: More research required

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Category: Quality of Life

Title: Perceived consequences of ageing with late effects of polio and strategies for managing daily life: a qualitative study
Author: Catharina Sjödahl Hammarlund, Jan Lexell and Christina Brogårdh
Affiliation: 1Department of Health Sciences, Lund University, Box 157, SE-221 00 Lund, Sweden
2The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad, Sweden
3Department of Neurology and Rehabilitation Medicine, Skåne University Hospital, Lund, Sweden
4Department of Health Science, Luleå University of Technology, Luleå, Sweden
Catharina Sjödahl Hammarlund, Phone: +46462228961,
Email: [email protected]_lhadojS.anirahtaC.
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Biomed Central Geriatrics 2017; 17: 179.
Publication Year and Month: 2017

Abstract: Background
New or increased impairments may develop several decades after an acute poliomyelitis infection. These new symptoms, commonly referred to as late effects of polio (LEoP), are characterised by muscular weakness and fatigue, generalised fatigue, pain at rest or during activities and cold intolerance. Growing older with LEoP may lead to increased activity limitations and participation restrictions, but there is limited knowledge of how these persons perceive the practical and psychological consequences of ageing with LEoP and what strategies they use in daily life. The aim of this qualitative study was therefore to explore how ageing people with LEoP perceive the their situation and what strategies they use for managing daily life.

Methods
Seven women and seven men (mean age 70 years) were interviewed. They all had a confirmed history of acute poliomyelitis and new impairments after a stable period of at least 15 years. Data were transcribed verbatim and analysed using systematic text condensation.

Results
The latent analysis resulted in three categories ‘Various consequences of ageing with LEoP’, ‘Limitations in everyday activities and participation restrictions’, and ‘Strategies for managing daily life when ageing with LEoP’ and 12 subcategories. The new impairments led to decreased physical and mental health. The participants perceived difficulties in performing everyday activities such as managing work, doing chores, partaking in recreational activities and participating in social events, thereby experiencing emotional and psychological distress. They managed to find strategies that mitigated their worries and upheld their self-confidence, for example finding practical solutions, making social comparisons, minimising, and avoidance.

Conclusions: Ageing with LEoP affected daily life to a great extent. The participants experienced considerable impact of the new and increased impairments on their life situation. Consequently, their ability to participate in various social activities also became restricted. Social comparisons and practical solutions are strategies that facilitate adaptation and acceptance of the new situation due to LEoP. This emphasises the need to design rehabilitation interventions that focus on coping, empowerment and self-management for people ageing with LEoP.

Outcome of Research: More research required

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Category: Quality of Life

Title: FACTORS ASSOCIATED WITH QOL OF POLIO SURVIVORS IN JAPAN
Author: Satoru SAEKI and Kenji HACHISUKA
Affiliation: Department of Rehabilitation Medicine, University of Occupational and Environmental Health.
Moji Medical Center, Kitakyushu, Japan
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: JJOMT 54 (2006): 84-90.
Publication Year and Month: 2006 02

Abstract: Objectives: To examine the association of impairments and functional disabilities with health-related quality of life (QOL) of polio survivors in Japan.
Design: Cross-sectional survey.
Settings: Post-polio clinic at a university hospital.
Participants: Polio survivors (N=39) with mild muscle weakness living in the community who voluntarily participated in a health examination for post-polio syndrome.
Interventions: Not applicable.
Main Outcome Measures: The Medical Outcome Study 36-Item Short-Form (SF-36).
Results: Mean score on the physical component scale (43.0) of the SF-36 was lower than that of the mental component scale (52.2), and the vitality subscale for men was higher than that for women. Multivariate analyses identified that the physical dimension of the SF-36 was affected by muscle weakness, while the mental dimension of the SF-36 was affected by personal care activities.

Conclusions: Conclusions: Polio survivors with reduced physical functioning may maintain the mental aspect of QOL using their previous coping strategies to fight functional limitations. Coping with new health problems and adapting to the environment should be examined from not only the physical but also the mental viewpoint of QOL for polio survivors.

Outcome of Research: More research required

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Category: Quality of Life

Title: Factors associated with reduced quality of life in polio survivors in Korea
Author: Yang EJ (1), Lee SY (2), Kim K (3), Jung SH (4), Jang S-N (5), Han SJ (6), Kim W-H (7), Lim J-Y (1)
Affiliation: (1) Department of Rehabilitation Medicine, Seoul National University Bundang Hospital, Seongnam, Republic of Korea; (2) Department of Physical Medicine and Rehabilitation, Soonchunhyang University Bucheon Hospital, Gyeonggi, Republic of Korea; (3) Department of Rehabilitation Medicine, Seoul National University Hospital, Seoul, Republic of Korea; (4) Department of Rehabilitation Medicine, Seoul National University Boramae Medical Center, Seoul, Republic of Korea; (5) Red Cross College of Nursing, Chung-Ang University, Seoul, Republic of Korea; (6) Department of Rehabilitation Medicine, Ewha Womans University Medical Center Seoul, Republic of Korea; (7) Department of Rehabilitation Medicine, National Rehabilitation Center, Seoul, Republic of Korea; Xi'an Jiaotong University School of Medicine, China
Journal: Public Library of Science
Citation: PLoS One. 2015; 10(6): e0130448. doi: 10.1371/journal.pone.0130448
Publication Year and Month: 2015 06

Abstract: The purpose of this study is to assess health-related quality of life in polio survivors (PS) compared with that in the general population in Korea. Polio survivors (n = 120) from outpatient clinics at two hospitals, healthy controls (HC, n = 121) and members of the general population with activity limitations (AL, n = 121) recruited through a proportional-allocation, systematic sampling strategy from the Fourth Korean National Health and Nutrition Examination Survey were surveyed with self-rated health-related quality of life (Euro QoL five-dimensions). The proportion of participants who reported problems in mobility, usual activity, and symptoms of anxiety/depression were higher in the PS group compared with the HC and AL groups. There was no significant difference in the self-care dimension across the groups. Polio-specific questionnaire, pain, depression, fatigue, Modified Barthel Index (K-MBI) and Short Physical Performance Battery (SPPB) were assessed in the PS group. Those with post-poliomyelitis syndrome had greater problems in mobility, usual activity, and depression/anxiety. Polio survivors, especially those with more pain and fatigue symptoms, and those who did not have access to medical services had poorer health-related quality of life. These findings afford useful information for potential intervention improving quality of life in polio survivors.

Conclusions: In conclusion, the QoL of polio survivors is worse than that of the general population in terms of physical and functional status. Polio survivors experienced greater restriction in mobility and activity, greater pain, and greater depression/anxiety compared with controls, although there was no difference in the self-care domain. To improve the HRQoL of polio survivors, we need to provide better rehabilitation services.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Survey of the Late Effects of Polio in Lothian
Author: B. Pentland, D. J. Hellawell, J. Benjamin, R. Prasad
Affiliation: Rehabilitation Studies Unit
Journal: Rehabilitation Literature
Citation: Rehabilitation Studies Unit; January 1999
Publication Year and Month: 1999 01

Abstract: The Edinburgh Branch of the British Polio Fellowship (BPF) expressed the concern of members that the medical and related professions often appeared unfamiliar with the late consequences of polio and that services were not meeting their needs. In an attempt to determine the number of people affected and the nature of their experience, this postal survey was done in 1998.

A set of questionnaires were sent to 221 people, in Edinburgh and the Lothians, who had been identified as suffering polio in the past from those known to the BPF and hospital records. There were 125 replies which constituted the study population: 60% were female; the median age was 59 years; and the median time since original diagnosis was 51 years.

Common symptoms were: cold intolerance (70%); fatigue (66%); increased weakness in previously affected muscles (67%); new weakness in unaffected muscles (60%); muscle pain (64%); joint pain (61%); and joint stiffness (64%). These symptoms were often of recent onset. Other complaints included sleep disturbance (63%); exertional breathlessness (56%); headaches (33%); and swallowing difficulty (18%).

In terms of disability: 78% had difficulty with stairs; 72% with walking and 70% with bending. This was reflected in over a third reporting difficulty getting outdoors without help. Motor problems affecting upper limbs were present in over half the subjects. Daily activities were restricted because of severe pain in 38%. Over half (55%) the study population described difficulty living alone. The major factors restricting the lives of the subjects were physical problems, lack of energy and pain.

During the preceding 5 years, contact with health services were: hospital clinic 62%; physiotherapy 46%; occupational therapy 29%; speech therapy 2%; orthotics 40%; and wheelchair service 42%. The majority described satisfaction with these services but further study is warranted.

A conservative estimate is that there are about 300 people in Edinburgh and the Lothians with the range of difficulties demonstrated in this study and we suggest that special provision is made for them.

Conclusions: Half of the study population were under 59 years of age so that it would be incorrect to consider the population of people with post-polio symptoms as in the geriatric age group.
The commonest symptoms were cold intolerance, increased muscle weakness, muscle pain, fatigue and joint pain. It is particularly notable that these symptoms, with the exception of the first, were often of recent onset (i.e. within the last five years).
Pain is worthy of emphasis as a symptom, being commonly reported in the back and neck as well as in muscles and joints. It was also identified as a major source of limitation in daily activities.
Lower limb motor disabilities were extremely common with about 3/4 unable to walk a quarter of a mile or go up and down steps. Over 1/3 need help to leave their home or garden.
Motor disabilities of the upper limb were also common, affecting 1/3 to 1/2 of the population.
Physical disabilities, fatigue and pain are the principal causes of handicap in this population rather than mental or social factors.
Although those accessing health and related services generally reported them as satisfactory, there are no grounds for complacency and this area warrants further study.
The findings are similar to reports from England, the U.S.A and Scandinavia.
This study, although population based, was not designed to provide an accurate figure for the size of the post-polio population in Lothian. However, based on studies from other Western countries and our findings, we suggest that there may be approximately 1,500 polio survivors, at least 300 of whom are likely to experience significant health problems.

Outcome of Research:

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Comments (if any): Paul Cavendish (Clinical Health Educator): There are multifactorial issues which require assistance from skilled health professionals / multi-disciplinary approach in the areas of pain management, physical therapy, orthotics and assistive aids

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Category: Quality of Life

Title: Life purpose: effect on functional decline and quality of life in polio survivors.
Author: Harrison TC, Stuifbergen AK.
Affiliation: School of Nursing, University of Texas-Austin, USA. [email protected]
Journal: Rehabilitation Nursing
Citation: 2006 Jul-Aug;31(4):149-54.
Publication Year and Month: 2006 07

Abstract: This article explores the protective effects that finding a purpose in life has on the level of physical and mental impairment and overall quality of life. Results were gathered from a national sample of 2,153 polio survivors. Although the combined social and physical experience of living with the disabling effects of polio has been associated with accelerated aging due to an increased allostatic load, finding a purpose in life may diminish these effects. The findings of this study indicate that purpose in life is associated with less perceived decline in health. Moreover, purpose in life is predictive of better quality of life despite levels of physical and mental impairment. Rehabilitation nurses should consider ways to help persons with polio maintain activities and interests that promote their sense of purpose in life.

Conclusions: Rehabilitation nurses should consider ways to help persons with polio maintain activities and interests that promote their sense of purpose in life.

Outcome of Research: More research required

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Category: Quality of Life

Title: Surviving polio in a post-polio world
Author: Groce NE (1), Banks LM (2), Stein MA (3)
Affiliation: (1) Leonard Cheshire Disability and Inclusive Development Centre, University College London, London, UK; (2) London School of Hygiene and Tropical Medicine, London, UK; (3) Harvard Law School Project on Disability, Harvard Law School, Cambridge, USA
Journal: Social Science & Medicine
Citation: Social Science & Medicine. 2014 Apr;107;171-178
Publication Year and Month: 2014 04

Abstract: Excitement mounts as the global health and international development communities anticipate a polio-free world. Despite substantial political and logistical hurdles, only 223 cases of wild poliovirus in three countries were reported in 2012. Down 99% from the estimated 350,000 annual cases in 125 countries in 1988—this decline signals the imminent global eradication of polio.

However, elimination of new polio cases should not also signal an end to worldwide engagement with polio. As many as 20 million continue to live with the disabling consequences of the disease. In developed countries where polio immunization became universal after dissemination of the polio vaccine in the 1950s, almost all individuals who have had polio are now above age 50. But in many developing countries where polio vaccination campaigns reached large segments of the population only after 1988, millions disabled by polio are still children or young adults. Demographically, this group is also different. After three decades of immunization efforts, those children unvaccinated in the late 1980s were more likely to be from poorer rural and slum communities and to be girls—groups not only harder to reach than more affluent members of the population but also individuals who, if they contract polio, are less likely to have access to medical and rehabilitation programs or education, job training, employment and social support services.

The commitment to eradicate polio should not be considered complete while those living with the disabling sequelae of polio continue to live in poor health, poverty and social isolation. This paper reviews what is currently known about disabled survivors of polio and highlights areas of need in public health research, policy and programming. Based on a literature review, discussion and field observations, we identify continuing challenges posed by polio and argue that the attention, funding and commitment now being directed towards eradication be shifted to provide for the rehabilitative, medical, educational and social needs of those for whom the disabling sequelae of polio will remain a daily challenge for decades to come.

Conclusions:

Outcome of Research: Not applicable

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Category: Quality of Life

Title: An explanatory model of health promotion and quality of life for persons with post-polio syndrome.
Author: Stuifbergen AK, Seraphine A, Harrison T, Adachi E.
Affiliation: School of Nursing, The University of Texas at Austin, 1700 Red River, Austin, TX 78701, USA. [email protected]
Journal: Social Science & Medicine
Citation: 2005 Jan;60(2):383-93.
Publication Year and Month: 2005 01

Abstract: Although previous studies have examined selected factors influencing health promoting behaviors or quality of life, the complex interplay of these variables in persons with different chronic disabling conditions has not been investigated. This study tested an explanatory model of variables influencing health promotion and quality of life originally developed with a sample of persons with multiple sclerosis in a new sample of persons living with post-polio syndrome (PPS) in the USA. The sample of 1603 persons with PPS (1123 females, 478 males and 2 unknown) completed a battery of instruments including measures of severity of polio-related impairment, barriers to health promoting behaviors, resources, self-efficacy, acceptance, health promoting behaviors and perceived quality of life. A model originally developed in a sample of 786 persons with multiple sclerosis was assessed and modified using the weighted least squares procedure (WLS) which is implemented by LISREL8. The structural equation analyses resulted in a proper solution that exhibited adequate fit: chi2 (8, N = 1549)=84.22, p<0.05; GFI=0.96, IFI=0.90, CFI=0.90. The antecedent variables accounted for 65% of the variance in the frequency of health promoting behaviors and 53% of the variance in perceived quality of life. The model test supports the hypothesis that quality of life is the outcome of a complex interplay between contextual factors (severity of impairment), antecedent variables, and health promoting behaviors. It also suggests that the relationships among these variables are similar in samples of persons with two different chronic conditions. Further research using a qualitative approach is needed to clarify other contributors to quality of life in persons with post-polio syndrome.

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Outcome of Research: More research required

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There are currently 27 papers in this category.

Category: Quality of Life

Title: Growing older with post-polio syndrome:
Social and quality-of-life implications
Author: Andrea Duncan and Zinnia Batliwalla
Affiliation: 1Department of Occupational Science & Occupational Therapy, University
of Toronto, Toronto, ON, Canada
2March of Dimes Canada, Toronto, ON, Canada
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: SAGE Open Medicine
Volume 6: 1–7
Publication Year and Month: 2018 07

Abstract: Objectives: To understand the quality-of-life implications for post-polio syndrome survivors.
Methods: For this qualitative study, a focus group methodology, with a case study design, was used. The data were analyzed
for themes using a social ecological conceptual framework.
Results: Three focus groups were conducted with a total of 24 participants (N=24). Participants defined quality of life as
being able to engage in meaningful activities of daily living. Participants shared experiences of adapting to declining physical
health and embracing new activities of daily living. They expressed hope and shared stories that demonstrated resiliency.

Conclusions: The literature states that individuals aging with post-polio syndrome express concern that health providers
often know little about their disability condition. The participants in this study reflected this experience by sharing feelings of
misunderstanding from the medical community and expressing a desire to have more dynamic education for health providers.

Outcome of Research: More research required

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Category: Quality of Life

Title: Quality of life for post-polio syndrome: a patient derived, Rasch standard scale.
Author: Young CA, Quincey AC, Wong SM, Tennant A
Affiliation: Department of Neurology , Walton Centre NHS Trust , Lower Lane , Liverpool , UK.
ICF Unit , Swiss Paraplegic Research , Nottwil , Switzerland
Journal: Disability and Rehabilitation
Citation: 2018 Mar;40(5):597-602
Publication Year and Month: 2018 03

Abstract: OBJECTIVE:
To design a disease-specific quality of life (QoL) questionnaire for people with post-polio syndrome (PPS).

METHODS:
Qualitative interviews were conducted with 45 people with PPS to identify themes and derive potential items reflecting impact upon QoL. After cognitive debriefing, these were made into a questionnaire pack along with comparative questionnaires and posted to 319 patients. The 271 (85%) returned questionnaires were subjected to exploratory factor analysis (EFA) and Rasch analysis.

RESULTS:
A 25 item scale, the post-polio quality of life scale (PP-QoL), showed good fit to the Rasch model (conditional chi-square p = 0.156), unidimensionality (% t-tests 2.0: CI 0.7-3.8), and Cronbach's alpha of 0.87. With the latent estimate transformed to a 0-100 scale, the mean score was 56.9 (SD 18.5) with only 3.3% of respondents at the floor or ceiling of the scale. Test-retest reliability showed an intraclass correlation coefficient (ICC) (2.1) of 0.916, and correlation of 0.85.

Conclusions: CONCLUSION:
The disease-specific PP-QoL demonstrated excellent reliability, appropriate concurrent validity, and satisfied the standards of the Rasch model. It enables examination of the impact of health status upon perceived QoL, and the impact of rehabilitation interventions. The scale is freely available for academic or not-for-profit users to improve research in this neglected, disabling condition. Implications for Rehabilitation In post-polio syndrome (PPS), existing work examines aspects of health-related quality of life (HRQoL), such as activity limitations. A disease-specific QoL measure would enable researchers to model the impact of health status, such as fatigue or mobility restrictions, upon QoL in PPS. The post-polio quality of life scale (PP-QoL) is based on the patients' lived experience, meets Rasch standards and is free for use for academic and not-for-profit researchers. The raw score is reliable for individual use in clinical settings, and interval scale transformation is available for parametric applications and the calculation of change scores.

Outcome of Research: More research required

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Category: Quality of Life

Title: Sleep Disorders in Neuromuscular Diseases
Author: Eric J Gartman
Affiliation: The Warren Alpert School of Medicine of Brown University Division of Pulmonary, Critical Care, and Sleep Medicine, Providence VA Medical Center,
Providence, RI, US
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: US Respiratory & Pulmonary Diseases. 2018;3(1):27–32
Publication Year and Month: 2018

Abstract: Disturbances in sleep are common in patients with neuromuscular diseases (NMDs) and are the source of a significant amount of morbidity.Underlying these disorders of sleep are the physiologic alterations that result from progressive changes in muscle strength, effective ventilation, and control of respiration. This review will discuss the normal changes that occur during sleep, how the physiologic alterations present in neuromuscular and chest wall disorders affect these normal processes, how to assess patients for the presence of sleep disorders, and how to approach treatment.

Conclusions:

Outcome of Research: More research required

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Category: Quality of Life

Title: Perceived consequences of ageing with late effects of polio and strategies for managing daily life: a qualitative study
Author: Catharina Sjödahl Hammarlund, Jan Lexell and Christina Brogårdh
Affiliation: 1Department of Health Sciences, Lund University, Box 157, SE-221 00 Lund, Sweden
2The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad, Sweden
3Department of Neurology and Rehabilitation Medicine, Skåne University Hospital, Lund, Sweden
4Department of Health Science, Luleå University of Technology, Luleå, Sweden
Catharina Sjödahl Hammarlund, Phone: +46462228961,
Email: [email protected]_lhadojS.anirahtaC.
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Biomed Central Geriatrics 2017; 17: 179.
Publication Year and Month: 2017

Abstract: Background
New or increased impairments may develop several decades after an acute poliomyelitis infection. These new symptoms, commonly referred to as late effects of polio (LEoP), are characterised by muscular weakness and fatigue, generalised fatigue, pain at rest or during activities and cold intolerance. Growing older with LEoP may lead to increased activity limitations and participation restrictions, but there is limited knowledge of how these persons perceive the practical and psychological consequences of ageing with LEoP and what strategies they use in daily life. The aim of this qualitative study was therefore to explore how ageing people with LEoP perceive the their situation and what strategies they use for managing daily life.

Methods
Seven women and seven men (mean age 70 years) were interviewed. They all had a confirmed history of acute poliomyelitis and new impairments after a stable period of at least 15 years. Data were transcribed verbatim and analysed using systematic text condensation.

Results
The latent analysis resulted in three categories ‘Various consequences of ageing with LEoP’, ‘Limitations in everyday activities and participation restrictions’, and ‘Strategies for managing daily life when ageing with LEoP’ and 12 subcategories. The new impairments led to decreased physical and mental health. The participants perceived difficulties in performing everyday activities such as managing work, doing chores, partaking in recreational activities and participating in social events, thereby experiencing emotional and psychological distress. They managed to find strategies that mitigated their worries and upheld their self-confidence, for example finding practical solutions, making social comparisons, minimising, and avoidance.

Conclusions: Ageing with LEoP affected daily life to a great extent. The participants experienced considerable impact of the new and increased impairments on their life situation. Consequently, their ability to participate in various social activities also became restricted. Social comparisons and practical solutions are strategies that facilitate adaptation and acceptance of the new situation due to LEoP. This emphasises the need to design rehabilitation interventions that focus on coping, empowerment and self-management for people ageing with LEoP.

Outcome of Research: More research required

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Category: Quality of Life

Title: Long-term socio-economic consequences and health care costs of poliomyelitis: a historical cohort study involving 3606 polio patients.
Author: Nielsen NM, Kay L, Wanscher B, Ibsen R, Kjellberg J, Jennum P.
Affiliation: 1 Department of Epidemiology Research, Statens Serum Institut, Artillerivej 5, 2300, Copenhagen S, Denmark. [email protected]
2 The PTU Rehabilitation Centre, Fjeldhammervej 8, 2610, Rødovre, Denmark.
3 Danish Center for Sleep Medicine, Department of Clinical Neurophysiology, Center for Healthy Ageing, Faculty of Health Sciences, University of Copenhagen, Glostrup Hospital, Copenhagen, Denmark.
4 Danish Institute for Local and Regional Government Research, Copenhagen, Denmark.
Journal: Journal of the Neurological Sciences
Citation: 2016 Jun;263(6):1120-8.
Publication Year and Month: 2016 06

Abstract: Worldwide 10-20 million individuals are living with disabilities after acute poliomyelitis. However, very little is known about the socio-economic consequences and health care costs of poliomyelitis. We carried out a historical register-based study including 3606 individuals hospitalised for poliomyelitis in Copenhagen, Denmark 1940-1954, and 13,795 age and gender-matched Danes. Participants were followed from 1980 until 2012, and family, socio-economic conditions and health care costs were evaluated in different age groups using chi-squared tests, boot-strapped t tests or hazard ratios (HR) calculated in Cox-regression models. The analyses were performed separately for paralytic and non-paralytic polio survivors and their controls, respectively. Compared with controls a higher percentage of paralytic polio survivors remained childless, whereas no difference was observed for non-paralytic polio survivors. The educational level among paralytic as well as non-paralytic polio survivors was higher than that among their controls, employment rate at the ages of 40, 50 and 60 years was slightly lower, whereas total income in the age intervals of 31-40, 41-50 and 51-60 years were similar to controls. Paralytic and non-paralytic polio survivors had a 2.5 [HR = 2.52 (95 % confidence interval (CI); 2.29-2.77)] and 1.4 [HR = 1.35 (95 % CI; 1.23-1.49)]-fold higher risk, respectively, of receiving disability pension compared with controls. Personal health care costs were considerably higher in all age groups in both groups of polio survivors. Individuals with a history of poliomyelitis are well educated, have a slightly lower employment rate, an income similar to controls, but a considerably higher cost in the health care system.

Conclusions: Individuals with a history of poliomyelitis are well educated, have a slightly lower employment rate, an income similar to controls, but a considerably higher cost in the health care system.

Outcome of Research: More research required

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Category: Quality of Life

Title: Factors associated with reduced quality of life in polio survivors in Korea
Author: Yang EJ (1), Lee SY (2), Kim K (3), Jung SH (4), Jang S-N (5), Han SJ (6), Kim W-H (7), Lim J-Y (1)
Affiliation: (1) Department of Rehabilitation Medicine, Seoul National University Bundang Hospital, Seongnam, Republic of Korea; (2) Department of Physical Medicine and Rehabilitation, Soonchunhyang University Bucheon Hospital, Gyeonggi, Republic of Korea; (3) Department of Rehabilitation Medicine, Seoul National University Hospital, Seoul, Republic of Korea; (4) Department of Rehabilitation Medicine, Seoul National University Boramae Medical Center, Seoul, Republic of Korea; (5) Red Cross College of Nursing, Chung-Ang University, Seoul, Republic of Korea; (6) Department of Rehabilitation Medicine, Ewha Womans University Medical Center Seoul, Republic of Korea; (7) Department of Rehabilitation Medicine, National Rehabilitation Center, Seoul, Republic of Korea; Xi'an Jiaotong University School of Medicine, China
Journal: Public Library of Science
Citation: PLoS One. 2015; 10(6): e0130448. doi: 10.1371/journal.pone.0130448
Publication Year and Month: 2015 06

Abstract: The purpose of this study is to assess health-related quality of life in polio survivors (PS) compared with that in the general population in Korea. Polio survivors (n = 120) from outpatient clinics at two hospitals, healthy controls (HC, n = 121) and members of the general population with activity limitations (AL, n = 121) recruited through a proportional-allocation, systematic sampling strategy from the Fourth Korean National Health and Nutrition Examination Survey were surveyed with self-rated health-related quality of life (Euro QoL five-dimensions). The proportion of participants who reported problems in mobility, usual activity, and symptoms of anxiety/depression were higher in the PS group compared with the HC and AL groups. There was no significant difference in the self-care dimension across the groups. Polio-specific questionnaire, pain, depression, fatigue, Modified Barthel Index (K-MBI) and Short Physical Performance Battery (SPPB) were assessed in the PS group. Those with post-poliomyelitis syndrome had greater problems in mobility, usual activity, and depression/anxiety. Polio survivors, especially those with more pain and fatigue symptoms, and those who did not have access to medical services had poorer health-related quality of life. These findings afford useful information for potential intervention improving quality of life in polio survivors.

Conclusions: In conclusion, the QoL of polio survivors is worse than that of the general population in terms of physical and functional status. Polio survivors experienced greater restriction in mobility and activity, greater pain, and greater depression/anxiety compared with controls, although there was no difference in the self-care domain. To improve the HRQoL of polio survivors, we need to provide better rehabilitation services.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Health related quality of life in Turkish polio survivors: impact of post-polio on the health related quality of life in terms of functional status, severity of pain, fatigue, and social, and emotional functioning
Author: Yesim Garip (1), Filiz Eser (2), Hatice Bodur (2), Bedriye Baskan (2), Filiz Sivas (2), Ozlem Yilmaz (2)
Affiliation: (1) Department of Physical Medicine and Rehabilitation, Ankara Basak Medical Center, Ankara, Turkey; (2) Department of Physical Medicine and Rehabilitation, Ankara Numune Training and Research Hospital, Ankara, Turkey
Journal: Brazilian Journal of Rheumatology (Revista Brasileira de Reumatologia)
Citation: Rev Bras Reumatol. 2015 Mar; dx.doi.org/10.1016/j.rbre.2014.12.006
Publication Year and Month: 2015 03

Abstract: OBJECTIVE: To determine the impact of postpolio-syndrome on quality of life in polio survivors.

METHODS: Forty polio survivors were included in the study. Twenty-one patients fulfilling the Halstead's postpolio-syndrome criteria participated in postpolio-syndrome group. The remaining nineteen patients formed non-postpolio-syndrome group. Control group was composed of forty healthy subjects. Quality of life was evaluated by Nottingham Health Profile, depression by Beck Depression Scale and fatigue by Fatigue Symptom Inventory. Isometric muscle strength was measured by manual muscle testing.

RESULTS: Total manual muscle testing score was 26.19 ± 13.24 (median: 29) in postpolio-syndrome group and 30.08 ± 8.9 (median: 32) in non-postpolio-syndrome group. Total manual muscle testing scores of non-postpolio-syndrome group were significantly higher than that of postpolio-syndrome group. Patients with postpolio-syndrome reported significantly higher levels of fatigue and reduced quality of life in terms of physical mobility, pain and energy when compared with patients without postpolio-syndrome and control group. It was not reported a statistically significant difference in social and emotional functioning and sleep quality between postpolio-syndrome, non-postpolio-syndrome and control groups. Also it was not found any statistically significant difference in Beck Depression Scale scores among the groups.

Conclusions: Postpolio-syndrome has a negative impact on quality of life in terms of functional status, severity of pain and energy. The identification, early recognition and rehabilitation of postpolio-syndrome patients may result in an improvement in their quality of life.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: The association between post-polio symptoms as measured by the Index of Post-Polio Sequelae and self-reported functional status
Author: Schwartz I, Gartsman I, Adler B, Friedlander Y, Manor O, Levine H, Meiner Z
Affiliation: Department of Physical Medicine and Rehabilitation, Hadassah Medical Center, Israel; The Hebrew University-Hadassah, Braun School of Public Health, Israel; Department of Physical Medicine and Rehabilitation, Hadassah Medical Center, Israel. Electronic address: [email protected]
Journal: Journal of the Neurological Sciences
Citation: J Neurol Sci. 2014 Oct 15;345(1-2):87-91. doi: 10.1016/j.jns.2014.07.012
Publication Year and Month: 2014 10

Abstract: OBJECTIVE: To evaluate the association between self-reported severity of polio sequelae and current functional status among polio survivors.

METHODS: This was a cross sectional study of 195 polio survivors attending a polio outpatient clinic at a university hospital. The main outcome measures of demographic, medical, social, and functional data were gleaned from a questionnaire adapted for the polio population. The severity of polio sequelae was evaluated with the self-reported Index of Post-Polio Sequelae (IPPS).

RESULTS: The mean age of our sample was 57.6 ± 10.5 years, 53% were men, 38% had acquired higher education and 37% were employed. We found significant correlations between the total IPPS score and independence in activity of daily living (P<0.05), the use of walking aids (P<0.005) and mobility in and out-of-doors (P<0.0001). A positive correlation was also found between the total IPPS score and subjective assessment of physical and mental health (P<0.0001).

Conclusions: Higher disability in ADL and mobility and lower perception of physical and mental health in polio survivors were associated with a higher score on the IPPS, reflecting greater severity of polio sequelae. These findings demonstrate the IPPS as a useful tool in the clinical evaluation of the polio population, however further data is needed in order to determine if this index can assess clinically significant changes over time.

Outcome of Research: More research required.

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Category: Quality of Life

Title: Quality of life in Swedish patients with post-polio syndrome with a focus on age and sex
Author: Jung TD (1), Broman L, Stibrant-Sunnerhagen K, Gonzalez H, Borg K
Affiliation: (1) Department of Clinical Sciences, Division of Rehabilitation Medicine, Karolinska Institutet, Danderyds Hospital, Stockholm; Institute for Neuroscience and Physiology, Section for Clinical Neuroscience and Rehabilitation, Göteborg University, Göteborg, Sweden; Department of Rehabilitation Medicine, Kyungpook National University Hospital, Daegu, South Korea
Journal: International Journal of Rehabilitation Research
Citation: Int J Rehabil Res. 2014 Jun;37(2):173-9. doi: 10.1097/MRR.0000000000000052
Publication Year and Month: 2014 06

Abstract: To investigate the health-related quality of life (QOL) in Swedish patients with post-polio syndrome (PPS), with a focus on sex and age. A total of 364 patients were recruited from five Swedish post-polio clinics. Analysis was carried out using SF-36 and data were compared with those of a normal population. QOL was significantly lower in PPS patients for all eight subdomains and the two main scores (physical compound score and mental compound score) when compared with the controls. Male patients had a significantly higher QOL than female patients for all subdomains and also for mental compound score and physical compound score, a phenomenon also observed in the normal population. There was a decrease in QOL in the physical domains and an increase in vitality with age. PPS decreases health-related QOL in both sexes, more in female patients. QOL for physical domains decreases whereas vitality increases with age in both sexes.

Conclusions:

Outcome of Research: Effective

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Category: Quality of Life

Title: Surviving polio in a post-polio world
Author: Groce NE (1), Banks LM (2), Stein MA (3)
Affiliation: (1) Leonard Cheshire Disability and Inclusive Development Centre, University College London, London, UK; (2) London School of Hygiene and Tropical Medicine, London, UK; (3) Harvard Law School Project on Disability, Harvard Law School, Cambridge, USA
Journal: Social Science & Medicine
Citation: Social Science & Medicine. 2014 Apr;107;171-178
Publication Year and Month: 2014 04

Abstract: Excitement mounts as the global health and international development communities anticipate a polio-free world. Despite substantial political and logistical hurdles, only 223 cases of wild poliovirus in three countries were reported in 2012. Down 99% from the estimated 350,000 annual cases in 125 countries in 1988—this decline signals the imminent global eradication of polio.

However, elimination of new polio cases should not also signal an end to worldwide engagement with polio. As many as 20 million continue to live with the disabling consequences of the disease. In developed countries where polio immunization became universal after dissemination of the polio vaccine in the 1950s, almost all individuals who have had polio are now above age 50. But in many developing countries where polio vaccination campaigns reached large segments of the population only after 1988, millions disabled by polio are still children or young adults. Demographically, this group is also different. After three decades of immunization efforts, those children unvaccinated in the late 1980s were more likely to be from poorer rural and slum communities and to be girls—groups not only harder to reach than more affluent members of the population but also individuals who, if they contract polio, are less likely to have access to medical and rehabilitation programs or education, job training, employment and social support services.

The commitment to eradicate polio should not be considered complete while those living with the disabling sequelae of polio continue to live in poor health, poverty and social isolation. This paper reviews what is currently known about disabled survivors of polio and highlights areas of need in public health research, policy and programming. Based on a literature review, discussion and field observations, we identify continuing challenges posed by polio and argue that the attention, funding and commitment now being directed towards eradication be shifted to provide for the rehabilitative, medical, educational and social needs of those for whom the disabling sequelae of polio will remain a daily challenge for decades to come.

Conclusions:

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities
Author: Atwal A, Spiliotopoulou G, Coleman C, Harding K, Quirke C, Smith N, Osseiran Z, Plastow N, Wilson L
Affiliation: Division of Occupational Therapy, School of Health Sciences and Social Care, Brunel University, Uxbridge, UK
Journal: Health Expectations
Citation: Health Expect. 2014 Jan;doi:10.1111/hex.12152
Publication Year and Month: 2014 01

Abstract: INTRODUCTION: The term ‘post-polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.

AIM: To gain an in-depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.

METHOD: Six focus groups were conducted with 51 participants from two regions in England. Data were audio-taped and analysed using thematic analysis.

RESULTS: Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health-care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.

Conclusions: It is suggested that health-care professionals should consider factors which influence happiness and implement a person-centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health-care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.

Outcome of Research: More research required

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Category: Quality of Life

Title: Multiple Chronic Medical Conditions and Health-Related Quality of Life in Older Adults, 2004–2006
Author: John P. Barile, PhD,corresponding author William W. Thompson, PhD, Matthew M. Zack, MD, Gloria L. Krahn, PhD, MPH, Willi Horner-Johnson, PhD, and Sonya E. Bowen, MSW
Affiliation: William W. Thompson, Matthew M. Zack, Gloria L. Krahn, Centers for Disease Control and Prevention, Atlanta, Georgia; Willi Horner-Johnson, Oregon Health and Science University, Portland, Oregon; Sonya E. Bowen, Centers for Medicare and Medicaid Services, Baltimore, Maryland.
Corresponding Author: John P. Barile, PhD, University of Hawai‘i at Mānoa, 2530 Dole St, Sakamaki Hall, C404, Honolulu, HI 96822. Telephone: 808-956-6271. E-mail: [email protected]
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Preventing Chronic Disease, Published online 2013 Sep 26. doi: 10.5888/pcd10.120282
Publication Year and Month: 2013 09

Abstract: Introduction
Understanding longitudinal relationships among multiple chronic conditions, limitations in activities of daily living, and health-related quality of life is important for identifying potential opportunities for health promotion and disease prevention among older adults.

Methods
This study assessed longitudinal associations between multiple chronic conditions and limitations in activities of daily living on health-related quality of life among older adults (≥65 years) from 2004 through 2006, using data from the Medicare Health Outcomes Survey (N = 27,334).

Results
Using a longitudinal path model, we found the numbers of chronic conditions at baseline and 2-year follow-up were independently associated with more limitations in activities of daily living at 2-year follow-up. In addition, more limitations in activities of daily living at 2-year follow-up were associated with worse health-related quality of life during the follow-up time period. The association between multiple chronic conditions and indices of health-related quality of life was mediated by changes in limitations in activities of daily living.

Conclusions: Both baseline and new multiple chronic conditions led to worse health in terms of activities of daily living and health-related quality of life and should be considered important outcomes to intervene on for improved long-term health. In addition, public health practitioners should consider addressing classes of multiple chronic conditions by using interventions designed to reduce the emergence of multiple chronic conditions, such as physical activity, reductions in smoking rates, and improved and coordinated access to health care services.

Outcome of Research: More research required

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Category: Pain, Quality of Life

Title: Impact of pain on quality of life in patients with post-polio syndrome
Author: Werhagen L, Borg K
Affiliation: Division of Rehabilitation Medicine, Department of Clinical Sciences, Karolinska Institutet Danderyd Hospital, Stockholm, Sweden
Journal: Journal of Rehabilitation Medicine
Citation: J Rehabil Med. 2013; 45: 161–163. doi: 10.2340/16501977-1096
Publication Year and Month: 2013 00

Abstract: OBJECTIVE: Post-polio syndrome is a neurological disorder occurring several years after an acute polio infection. The main symptoms are increased muscular weakness and atrophy, fatigue and pain. Pain is present more often in younger individuals and in females and, according to the visual analogue scale (VAS), the intensity of pain is relatively high. The aim of the present study was to analyse the impact of pain on quality of life in patients with post-polio syndrome.

DESIGN: Transversal study.

PATIENTS AND METHODS: Patients with post-polio syndrome underwent a thorough neurological and general examination. They were interviewed about the presence and intensity of pain during the previous 3 months, then completed the quality of life inventory Short-Form 36 (SF-36), which included questions about pain during the previous 4 weeks, and rated their pain intensity during the previous 24 h according to the VAS.

RESULTS: Seventy-seven of the patients (68%) experienced pain at the examination. Pain was found to have a significant impact on the SF-36 subdomains Vitality and General health. A correlation was found between pain during the previous 3 months, the previous 4 weeks, and the previous 24 h.

DISCUSSION: Pain is common in patients with post-polio syndrome. Although patients have a high mean VAS score the pain only affects quality of life for Vitality and General Health, but not for other physical and mental domains.

Conclusions:

Outcome of Research: Not applicable.

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Category: Quality of Life

Title: Life satisfaction and self-reported impairments in persons with late effects of polio.
Author: Lexell J, Brogårdh C.
Affiliation: Department of Health Sciences, Lund University, 22100 Lund, Sweden. [email protected]
Journal: Annals of Physical and Rehabilitation Medicine
Citation: Volume 55, Issues 9–10, December 2012, Pages 577-589
Publication Year and Month: 2012 12

Abstract: Objective
Decades after an acute poliomyelitis infection many persons experience new symptoms or impairments which may affect their life satisfaction. The objective of this study was to investigate the association between life satisfaction and self-reported impairments in persons with late effects of polio.

Material and methods
One hundred and sixty-nine persons (104 women and 65 men) with prior polio responded on admission to rehabilitation to the Life Satisfaction Questionnaire (LiSat-11) assessing satisfaction with life as a whole and 10 domains of life satisfaction and to a 13-item questionnaire assessing self-reported impairments related to late effects of polio.

Results
A majority was to some degree satisfied with life as a whole and with all 10 domains of life satisfaction in LiSat-11, but less than 20% was very satisfied or satisfied with their somatic health. Muscle fatigue, muscle weakness, general fatigue, muscle and/or joint pain during physical activity and cold intolerance were the most frequently reported impairments. Overall, those who rated themselves as not satisfied (according to LiSat-11) reported significantly higher degrees of impairment than those who were satisfied. The relationships between the items of life satisfaction in LiSat-11 and the items in the self-report questionnaire varied from −0.01 to −0.64.

Conclusions: Satisfaction with life as a whole, and different domains of life satisfaction are low to moderately associated with self-reported impairments. This implies that rehabilitation interventions must address not only self-reported impairments but also activity limitations and participation restrictions in order to enhance life satisfaction in people with late effects of polio.

Outcome of Research: More research required

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Category: Assistive Technology, Quality of Life

Title: Assistive technology and prediction of happiness in people with post-polio syndrome
Author: Spiliotopoulou G, Fowkes C, Atwal A
Affiliation: Brunel University, School of Health Sciences and Social Care , Uxbridge, UB8 3PH , UK
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil Assist Technol. 2012 May;7(3):199-204. doi: 10.3109/17483107.2011.616921. Epub 2011 Oct 6
Publication Year and Month: 2012 05

Abstract: PURPOSE: To explore the relationship between level of happiness in people with post-polio syndrome (PPS) and assistive technology (AT) by taking into account confounding factors such as age, gender and house composition.

METHOD: Existing data from 218 adults with PPS, who had completed a cross-sectional survey conducted by the British Polio Fellowship in 2007, were used for a secondary quantitative analysis. Ordinal logistic regression was applied to determine whether ownership of or the need for AT predicted happiness in people with PPS.

RESULTS: Ownership of AT did not predict happiness, whereas the perceived need for AT was a significant predictor of feeling less happy (p = 0.028). Among the different types of AT needed, only need of home adaptations combined with major equipment was close to being significantly associated with less happiness (p = 0.078). Being older (p < 0.001) and living with a partner (p < 0.001) significantly increased the likelihood of feeling happier.

Conclusions: The findings indicate the importance of the contribution of need for AT in explaining happiness in people with PPS. The fact that users reported unmet equipment needs urge for increased user decision making and better understanding of why perceived needs are not resolved.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Post-polio syndrome: impact of hope on quality of life
Author: Shiri S, Wexler ID, Feintuch U, Meiner Z, Schwartz I
Affiliation: Department of Physical and Medical Rehabilitation, Hadassah University Hospital, Mount Scopus, Jerusalem, Israel
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2012;34(10):824-30. doi: 10.3109/09638288.2011.623755. Epub 2011 Dec 10
Publication Year and Month: 2011 12

Abstract: PURPOSE: To determine the effect of future-oriented coping strategies on the quality of life (QOL) of individuals with post-polio syndrome (PPS).

METHODS: A correlative study, in which a cohort of 61 patients was surveyed and a group of 40 healthy, age-matched individuals served as controls. Patients were surveyed as to their QOL, levels of hope and utilization of proactive coping, employment status and degree of functionality.

RESULTS: PPS patients had lower total, physical and mental QOL indices compared to controls. Future-oriented coping strategies associated with hope were positively associated with physical and mental QOL in the PPS group, but not in the controls. In a multivariate analysis, hope and employment status predicted higher QOL among those with PPS.

Conclusions: Future-oriented coping strategies, particularly hope, are distinctively associated with improved QOL benefits in PPS patients. Fostering future-oriented coping related to hope may improve the self-perceived mental and physical status of patients with PPS.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Quality of life and health conditions reported from two post-polio clinics in Israel.
Author: Jacob T, Shapira A.
Affiliation: Physical Therapy Department, Ariel University Center of Samaria, Ariel, Israel. [email protected]
Journal: Journal of Rehabilitation Medicine
Citation: 2010 Apr;42(4):377-9
Publication Year and Month: 2010 04

Abstract: OBJECTIVE:
To evaluate the perceptions of health and quality of life among a group of polio survivors in Israel and to identify potential activities for improving their quality of life.

DESIGN:
An observational study.

SUBJECTS:
The sample consisted of 101 polio survivors who sought treatment at 2 post-polio clinics in Israel. The majority of participants were between the ages of 45 and 65 years, and approximately 25% were wheelchair-bound.

METHODS:
Participants were invited to attend a seminar, where they were invited to complete a questionnaire on demographic variables, mobility, perceptions of and satisfaction with health status and quality of life, and the potential contribution of 16 activities to improve their quality of life.

RESULTS:
Participants had low physical scores and normative mental scores. Mean scores on the Short-Form-12 questionnaire for physical and mental components were 32.9 and 50.3, respectively. Approximately 70% expressed the belief that exposure to up-to-date information about post-polio, as well as participation in social activities, might improve their quality of life.

Conclusions: Information about the physical and mental components of polio survivors, as well as the desire to partake in specific activities for polio survivors, may serve as a basis for the operations and prioritization of service providers.

Outcome of Research: More research required

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Category: Quality of Life

Title: Life satisfaction in persons with late effects of polio. Applied Research in Quality of Life
Author: Lund ML, Lexell J.
Affiliation: Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden. [email protected]
Journal: Disability and Rehabilitation
Citation: 2009;31(19):1592-7.
Publication Year and Month: 2009 09

Abstract: PURPOSE:
To assess the relationship between participation and problems with participation in life situations, and life satisfaction in persons with late effects of polio.

METHODS:
One hundred fifty-eight persons with late effects of polio responded to a postal questionnaire including the Swedish versions of the Impact on Participation and Autonomy Questionnaire (IPA-S) and Life Satisfaction Questionnaire (LiSat-11).

RESULTS:
The persons' perceived participation in the five domains of participation in the IPA-S was significantly correlated with their satisfaction with life as a whole and with most of the 10 domains of life satisfaction. Significant differences in satisfaction with life as a whole and with eight of the 10 domains in LiSat-11 were found between groups of increasing severe problems with participation. Greater number of reports of severe problems with participation corresponded with gradually decreased satisfaction with life as a whole and with satisfaction in the eight domains in LiSat-11.

Conclusions: Perceived participation and problems with participation in life situations are determinants of life satisfaction in persons with late effects of polio. This implies that addressing participation and problems with participation in the rehabilitation of persons with late effects of polio may lead to an enhanced life satisfaction.

Outcome of Research: More research required

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Category: Quality of Life

Title: Impact of post-polio-related fatigue on quality of life
Author: On AY, Oncu J, Atamaz F, Durmaz B
Affiliation: Department of Physical Medicine and Rehabilitation, Ege University Medical School, Izmir, Turkey
Journal: Journal of Rehabilitation Medicine
Citation: J Rehabil Med. 2006 Sep;38(5):329-32
Publication Year and Month: 2006 09

Abstract: OBJECTIVE: To assess the impact of post-polio-related fatigue on quality of life.

DESIGN: Cross-sectional case control study.

SUBJECTS: Patients without additional health problems that may induce fatigue were selected from among 82 polio survivors. Twenty-six patients with post-polio syndrome and 10 without post-polio syndrome were included. Control group consisted of 30 healthy volunteers.

METHODS: We assessed presence and severity of fatigue by Fatigue Severity Scale, quality of life by Nottingham Health Profile, and impact of fatigue on quality of life by Fatigue Impact Scale. Leg muscle strength was measured by manual muscle testing.

RESULTS: Strength of leg muscles showed no differences between the patients with and without post-polio syndrome. Patients with post-polio syndrome reported significantly higher levels of fatigue and reduced quality of life compared with both patients without post-polio syndrome and control group. Fatigue Impact Scale revealed that fatigue did not significantly impair mental health, but had a negative impact especially on physical and psychosocial functioning of the patients with post-polio syndrome.

Conclusions: Post-polio-related fatigue seems to be an important factor for further impairment of quality of life in polio survivors.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: Life purpose: effect on functional decline and quality of life in polio survivors.
Author: Harrison TC, Stuifbergen AK.
Affiliation: School of Nursing, University of Texas-Austin, USA. [email protected]
Journal: Rehabilitation Nursing
Citation: 2006 Jul-Aug;31(4):149-54.
Publication Year and Month: 2006 07

Abstract: This article explores the protective effects that finding a purpose in life has on the level of physical and mental impairment and overall quality of life. Results were gathered from a national sample of 2,153 polio survivors. Although the combined social and physical experience of living with the disabling effects of polio has been associated with accelerated aging due to an increased allostatic load, finding a purpose in life may diminish these effects. The findings of this study indicate that purpose in life is associated with less perceived decline in health. Moreover, purpose in life is predictive of better quality of life despite levels of physical and mental impairment. Rehabilitation nurses should consider ways to help persons with polio maintain activities and interests that promote their sense of purpose in life.

Conclusions: Rehabilitation nurses should consider ways to help persons with polio maintain activities and interests that promote their sense of purpose in life.

Outcome of Research: More research required

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Category: Quality of Life

Title: FACTORS ASSOCIATED WITH QOL OF POLIO SURVIVORS IN JAPAN
Author: Satoru SAEKI and Kenji HACHISUKA
Affiliation: Department of Rehabilitation Medicine, University of Occupational and Environmental Health.
Moji Medical Center, Kitakyushu, Japan
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: JJOMT 54 (2006): 84-90.
Publication Year and Month: 2006 02

Abstract: Objectives: To examine the association of impairments and functional disabilities with health-related quality of life (QOL) of polio survivors in Japan.
Design: Cross-sectional survey.
Settings: Post-polio clinic at a university hospital.
Participants: Polio survivors (N=39) with mild muscle weakness living in the community who voluntarily participated in a health examination for post-polio syndrome.
Interventions: Not applicable.
Main Outcome Measures: The Medical Outcome Study 36-Item Short-Form (SF-36).
Results: Mean score on the physical component scale (43.0) of the SF-36 was lower than that of the mental component scale (52.2), and the vitality subscale for men was higher than that for women. Multivariate analyses identified that the physical dimension of the SF-36 was affected by muscle weakness, while the mental dimension of the SF-36 was affected by personal care activities.

Conclusions: Conclusions: Polio survivors with reduced physical functioning may maintain the mental aspect of QOL using their previous coping strategies to fight functional limitations. Coping with new health problems and adapting to the environment should be examined from not only the physical but also the mental viewpoint of QOL for polio survivors.

Outcome of Research: More research required

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Category: Quality of Life

Title: An explanatory model of health promotion and quality of life for persons with post-polio syndrome.
Author: Stuifbergen AK, Seraphine A, Harrison T, Adachi E.
Affiliation: School of Nursing, The University of Texas at Austin, 1700 Red River, Austin, TX 78701, USA. [email protected]
Journal: Social Science & Medicine
Citation: 2005 Jan;60(2):383-93.
Publication Year and Month: 2005 01

Abstract: Although previous studies have examined selected factors influencing health promoting behaviors or quality of life, the complex interplay of these variables in persons with different chronic disabling conditions has not been investigated. This study tested an explanatory model of variables influencing health promotion and quality of life originally developed with a sample of persons with multiple sclerosis in a new sample of persons living with post-polio syndrome (PPS) in the USA. The sample of 1603 persons with PPS (1123 females, 478 males and 2 unknown) completed a battery of instruments including measures of severity of polio-related impairment, barriers to health promoting behaviors, resources, self-efficacy, acceptance, health promoting behaviors and perceived quality of life. A model originally developed in a sample of 786 persons with multiple sclerosis was assessed and modified using the weighted least squares procedure (WLS) which is implemented by LISREL8. The structural equation analyses resulted in a proper solution that exhibited adequate fit: chi2 (8, N = 1549)=84.22, p<0.05; GFI=0.96, IFI=0.90, CFI=0.90. The antecedent variables accounted for 65% of the variance in the frequency of health promoting behaviors and 53% of the variance in perceived quality of life. The model test supports the hypothesis that quality of life is the outcome of a complex interplay between contextual factors (severity of impairment), antecedent variables, and health promoting behaviors. It also suggests that the relationships among these variables are similar in samples of persons with two different chronic conditions. Further research using a qualitative approach is needed to clarify other contributors to quality of life in persons with post-polio syndrome.

Conclusions:

Outcome of Research: More research required

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Category: Quality of Life

Title: The influence of post-polio syndrome on independence and life satisfaction
Author: Burger H (1), Marincek C
Affiliation: (1) Institute for Rehabilitation, Ljubljana, Slovenia
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2000 May 10;22(7):318-22
Publication Year and Month: 2000 10

Abstract: PURPOSE: The aim of the study was to find out the influence of the new symptoms on life satisfaction and independent living and the most frequent disabilities in patients with post-polio syndrome that are affecting the satisfaction and independence.

METHOD: A questionnaire was sent to all the post-polio survivors (207) who visited the Rehabilitation Institute in Ljubljana at least once in the last ten years. We got 100 answers, which were analysed by SPSS (statistical package for social sciences).

RESULTS: Sixty nine reported that they had new symptoms that may be classified as post-polio syndrome.

Conclusions: We have found that the new symptoms in post-polio survivors, which may be classified as post-polio syndrome, increased their walking and climbing stairs disability, increased their disability to perform daily activities and also decreased their satisfaction with life.

Outcome of Research: Not applicable

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Category: Quality of Life

Title: The health-related quality of life of patients suffering from the late effects of polio (post-polio).
Author: Kling C, Persson A, Gardulf A.
Affiliation: Department of Occupational Therapy, Department of Rehabilitation Medicine and The Nursing Care Research and Development Unit, Huddinge University Hospital, Stockholm, Sweden
Journal: Journal of Advanced Nursing
Citation: 2000;32(1):164-73.
Publication Year and Month: 2000 07

Abstract: In Sweden alone, there are today approximately 10 000-16 500 polio survivors. Between 60% and 80% experience new symptoms several years after the initial attack of poliomyelitis. The aims of this study were to investigate and describe the self-rated health-related quality of life and functional status of a group of Swedish patients with post-polio, to investigate whether any differences within the group could be related to demographic or disease-specific data and to compare the post-polio patients with individuals sampled from the general population. Data were obtained by using two questionnaires, the Swedish Health-Related Quality of Life Questionnaire (SWED-QUAL) and the Sickness Impact Profile (SIP). A total of 150 patients, 86 women and 64 men with median age 61 (20-82) years, were consecutively included. The study showed that the patients mainly reported that their physical, functional status was affected by their post-polio condition. Factors found to be associated with the physical, functional status were age and the number of parts of the body affected by the polio. On comparing the post-polio patients with two samples from the Swedish general population, it was found that the patients reported a poorer functional status and health-related quality of life. The women with post-polio reported more pain, as compared with both the men with post-polio and the women in the general population sample. The family life of the patients - in contrast to their physical abilities - did not seem to be affected by the new deteriorating condition. It is concluded that, owing to the wide range of symptoms, the patients with post-polio need care and support from multidisciplinary teams, including nurses and occupational therapists.

Conclusions:

Outcome of Research: More research required

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Category: Quality of Life

Title: Disability and quality of life in individuals with postpolio syndrome.
Author: Ahlström G, Karlsson U.
Affiliation: Research and Development Unit, Psychiatry and Habilitation, Orebro Medical Centre Hospital, Sweden. [email protected]
Journal: Disability and Rehabilitation
Citation: 2000 Jun 15;22(9):416-22.
Publication Year and Month: 2000 06

Abstract: PURPOSE:
The purpose of the study is to investigate disability and quality of life in individuals with the characteristic symptoms of postpolio syndrome.

METHOD:
Disability is assessed by means of the self-report activities of daily living instrument, and quality of life by means of Kaasa's questionnaire and the quality of life profile.

RESULTS:
The 39 subjects have on average lived with polio sequelae for 52 years. Their main difficulties are with moving, lifting and carrying. This means restricted mobility, sedentary activities and a need to prioritize. Half of them feel that polio has lessened their possibilities in life, and a quarter have still not accepted the limitations polio has involved. Nevertheless the majority report a high level of psychosocial well-being, and almost a quarter say that living with polio has meant personal development and strength. We found a significant correlation between on the one hand disability with regard to ambulation, arm strength and finger strength on the self-report ADL, and on the other hand the number of negative problems on the quality of life profile (0.33-0.45).

Conclusions: The latter instrument needs further testing before its validity can be determined with certainty.

Outcome of Research: More research required

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Category: Quality of Life

Title: Depression and life satisfaction among people ageing with post-polio and spinal cord injury.
Author: Kemp BJ, Krause JS.
Affiliation: Rehabilitaion Research and Training Center On Aging With Spinal Cord Injury, Rancho Los Amigos Medical Center, Downey, CA 90242, USA.
Journal: Disability and Rehabilitation
Citation: 1999 May-Jun;21(5-6):241-9.
Publication Year and Month: 1999 05

Abstract: PURPOSE AND BACKGROUND:
Attention has recently begun to focus on the ageing of individuals with disability, not only as a long-term follow-up issue but as a unique developmental issue itself. The majority of individuals with an onset of disability before age 30 can now expect to live into their 60s, 70s and beyond. Most of the secondary medical conditions that foreshortened life expectancy have been controlled and improved rehabilitation techniques have evolved over the last 50 years. The average age of persons with post-polio in the United States is over 50 and the average age of persons with spinal cord injury is in the late 40s. New medical, functional and psychosocial problems have been discovered among persons ageing with these and other disabilities. Most of these problems lack sufficient scientific explanation, and therefore, clinical interventions. Quality of life (QOL) issues become involved as these changes occur. From a psychological perspective, QOL can be either positive, as reflected in high life satisfaction, or negative, as reflected in distress and depression.

METHODS:
This study reports on life satisfaction and depression in 360 persons, 121 with post-polio, 177 with SCI and 62 non-disabled age-matched comparisons. The Geriatric Depression Scale and the Older Adult Health and Mood Questionnaire assess depressive symptomatology and a 10-item life satisfaction scale with four-point ratings on each item used.

RESULTS:
Life satisfaction varied by the group, with the non-disabled group higher than one or both of the other two groups on all scales and the post-polio group higher than the SCI group on six scales. Satisfaction with health, finances, work and overall life were most different. 22% of the post-polio group, 41% of the SCI group and 15% of the non-disabled group had at least significant repressive symptomatology.

Conclusions: The results for each group are discussed in terms of their relation to other coping variables that were assessed, particularly social support and coping methods.

Outcome of Research: More research required

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Category: Quality of Life

Title: Survey of the Late Effects of Polio in Lothian
Author: B. Pentland, D. J. Hellawell, J. Benjamin, R. Prasad
Affiliation: Rehabilitation Studies Unit
Journal: Rehabilitation Literature
Citation: Rehabilitation Studies Unit; January 1999
Publication Year and Month: 1999 01

Abstract: The Edinburgh Branch of the British Polio Fellowship (BPF) expressed the concern of members that the medical and related professions often appeared unfamiliar with the late consequences of polio and that services were not meeting their needs. In an attempt to determine the number of people affected and the nature of their experience, this postal survey was done in 1998.

A set of questionnaires were sent to 221 people, in Edinburgh and the Lothians, who had been identified as suffering polio in the past from those known to the BPF and hospital records. There were 125 replies which constituted the study population: 60% were female; the median age was 59 years; and the median time since original diagnosis was 51 years.

Common symptoms were: cold intolerance (70%); fatigue (66%); increased weakness in previously affected muscles (67%); new weakness in unaffected muscles (60%); muscle pain (64%); joint pain (61%); and joint stiffness (64%). These symptoms were often of recent onset. Other complaints included sleep disturbance (63%); exertional breathlessness (56%); headaches (33%); and swallowing difficulty (18%).

In terms of disability: 78% had difficulty with stairs; 72% with walking and 70% with bending. This was reflected in over a third reporting difficulty getting outdoors without help. Motor problems affecting upper limbs were present in over half the subjects. Daily activities were restricted because of severe pain in 38%. Over half (55%) the study population described difficulty living alone. The major factors restricting the lives of the subjects were physical problems, lack of energy and pain.

During the preceding 5 years, contact with health services were: hospital clinic 62%; physiotherapy 46%; occupational therapy 29%; speech therapy 2%; orthotics 40%; and wheelchair service 42%. The majority described satisfaction with these services but further study is warranted.

A conservative estimate is that there are about 300 people in Edinburgh and the Lothians with the range of difficulties demonstrated in this study and we suggest that special provision is made for them.

Conclusions: Half of the study population were under 59 years of age so that it would be incorrect to consider the population of people with post-polio symptoms as in the geriatric age group.
The commonest symptoms were cold intolerance, increased muscle weakness, muscle pain, fatigue and joint pain. It is particularly notable that these symptoms, with the exception of the first, were often of recent onset (i.e. within the last five years).
Pain is worthy of emphasis as a symptom, being commonly reported in the back and neck as well as in muscles and joints. It was also identified as a major source of limitation in daily activities.
Lower limb motor disabilities were extremely common with about 3/4 unable to walk a quarter of a mile or go up and down steps. Over 1/3 need help to leave their home or garden.
Motor disabilities of the upper limb were also common, affecting 1/3 to 1/2 of the population.
Physical disabilities, fatigue and pain are the principal causes of handicap in this population rather than mental or social factors.
Although those accessing health and related services generally reported them as satisfactory, there are no grounds for complacency and this area warrants further study.
The findings are similar to reports from England, the U.S.A and Scandinavia.
This study, although population based, was not designed to provide an accurate figure for the size of the post-polio population in Lothian. However, based on studies from other Western countries and our findings, we suggest that there may be approximately 1,500 polio survivors, at least 300 of whom are likely to experience significant health problems.

Outcome of Research:

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Comments (if any): Paul Cavendish (Clinical Health Educator): There are multifactorial issues which require assistance from skilled health professionals / multi-disciplinary approach in the areas of pain management, physical therapy, orthotics and assistive aids

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