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: 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: 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: 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: 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 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: 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 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 12 papers in this category.

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: 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: 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: 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: 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: 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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There are currently 12 papers in this category.

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: 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: 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: 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: 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: 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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There are currently 12 papers in this category.

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: 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: 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: 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: 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: 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

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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