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: Psychology

Title: Coping with the late effects: differences between depressed and nondepressed polio survivors
Author: Tate D, Kirsch N, Maynard F, Peterson C, Forchheimer M, Roller A, Hansen N
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor
Journal: American Journal of Physical Medicine & Rehabilitation
Citation: Am J Phys Med Rehabil. 1994 Feb;73(1):27-35
Publication Year and Month: 1994 02

Abstract: This study examined differences between depressed and nondepressed individuals with a history of paralytic poliomyelitis in terms of demographics, health status and coping strategies. The prevalence of distress and depression in this group of 116 polio survivors was determined. Subjects completed the Brief Symptom Inventory, the Coping with Disability Inventory and a questionnaire concerning their polio histories and self-perceptions of health. Medical assessments were performed by physicians. Only 15.8% of the sample had scores indicating depression and elevated distress. Depressed/distressed polio survivors were more likely to: be living alone, be experiencing further health status deterioration, seek professional help, view their health as poor, report greater pain, be less satisfied with their occupational status and their lives in general and exhibit poorer coping outcome behaviors in relation to their disability. Three factors in coping with the late effects of polio were identified through a factor analysis of the Coping with Disability Inventory: positive self-acceptance, information seeking/sharing about the disability and social activism. Differences between depressed/distressed and other polio survivors were found across these three factors, with depressed/distressed subjects having significantly lower coping scores. These and other results are discussed.

Conclusions:

Outcome of Research:

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Category: Activity Levels, Psychology

Title: Exercise therapy and cognitive behavioural therapy to improve fatigue, daily activity performance and quality of life in postpoliomyelitis syndrome: the protocol of the FACTS-2-PPS trial
Author: Koopman FS (1), Beelen A (1), Gerrits KH (2), Bleijenberg G (3), Abma TA (4), de Visser M (5), Nollet F (1)
Affiliation: (1) Department of Rehabilitation, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands; (2) Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, Amsterdam, The Netherlands; (3) Expert Centre Chronic Fatigue Nijmegen, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands;(4) Department of Medical Humanities, VU University Medical Centre, Amsterdam, The Netherlands; (5) Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands - [email protected]
Journal: BioMed Central Neurology
Citation: BMC Neurol. 2010 Jan 18;10:8. doi: 10.1186/1471-2377-10-8
Publication Year and Month: 2010 01

Abstract: BACKGROUND: Postpoliomyelitis Syndrome (PPS) is a complex of late onset neuromuscular symptoms with new or increased muscle weakness and muscle fatigability as key symptoms. Main clinical complaints are severe fatigue, deterioration in functional abilities and health related quality of life. Rehabilitation management is the mainstay of treatment. Two different therapeutic interventions may be prescribed (1) exercise therapy or (2) cognitive behavioural therapy (CBT). However, the evidence on the effectiveness of both interventions is limited. The primary aim of the FACTS-2-PPS trial is to study the efficacy of exercise therapy and CBT for reducing fatigue and improving activities and quality of life in patients with PPS. Additionally, the working mechanisms, patients' and therapists' expectations of and experiences with both interventions and cost-effectiveness will be evaluated.

METHODS/DESIGN: A multi-centre, single-blinded, randomized controlled trial will be conducted. A sample of 81 severely fatigued patients with PPS will be recruited from 3 different university hospitals and their affiliate rehabilitation centres. Patients will be randomized to one of three groups i.e. (1) exercise therapy + usual care, (2) CBT + usual care, (3) usual care. At baseline, immediately post-intervention and at 3- and 6-months follow-up, fatigue, activities, quality of life and secondary outcomes will be assessed. Costs will be based on a cost questionnaire, and statistical analyses on GEE (generalized estimated equations). Analysis will also consider mechanisms of change during therapy. A responsive evaluation will be conducted to monitor the implementation process and to investigate the perspectives of patients and therapists on both interventions.

DISCUSSION: A major strength of the FACTS-2-PPS study is the use of a mixed methods design in which a responsive and economic evaluation runs parallel to the trial. The results of this study will generate new evidence for the rehabilitation treatment of persons with PPS.

TRIAL REGISTRATION: Dutch Trial Register NTR1371.

Conclusions:

Outcome of Research: Not applicable.

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

Comments (if any):

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Category: Psychology

Title: Illness narratives of persons with post-polio syndrome
Author: Wenneberg S (1), Ahlström G
Affiliation: (1) Department of Caring Sciences, University of Orebro, Sweden
Journal: Journal of Advanced Nursing
Citation: J Adv Nurs. 2000 Feb;31(2):354-61
Publication Year and Month: 2000 02

Abstract: This qualitative study investigated the lifetime illness experience of individuals with the 'late effects' of polio or post-polio syndrome. Fifteen individuals were interviewed twice about their illness experience and the interviews were transcribed verbatim. The empirical material first underwent a categorization process. The preliminary categories generated through this analysis were then condensed into broader categories which in the final analysis gave rise to the following temporal pattern or stages of the illness experience: (1) the acute phase of polio and subsequent treatment and care; (2) rehabilitation and care at institutions for the disabled; (3) adaptation to a new life; (4) living with the post-polio syndrome today, and finally, (5) memories of the past and apprehensions concerning the future. In spite of the difficult experiences of falling ill and slowly recovering from a life-threatening disease, these individuals have had a good life and accomplished most of their ambitions in the areas of work and family life. Their present psychosocial situation is complicated by the symptoms of the post-polio syndrome which make them more vulnerable to stress, but they are able to handle this burden except when any added strain makes it overwhelming. This potential vulnerability may sometimes express itself as a sudden flashback to traumatic polio experiences and it is therefore important that nurses are aware of the illness history of this patient group.

Conclusions:

Outcome of Research: Not applicable

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Category: Psychology

Title: Living with the late effects of disability: a five-year follow-up survey of coping among post-polio survivors
Author: Westbrook M, McIlwain D
Affiliation: Faculty of Health Sciences, The University of Sydney
Journal: Australian Occupational Therapy Journal
Citation: Aust Occup Ther J. 1996 June;43(2):60-71
Publication Year and Month: 1996 06

Abstract: A follow-up survey of 176 people aged 33–77 yrs with postpolio syndrome found that while they were experiencing significantly less anxiety, uncertainty, depression, and helplessness concerning their increasing disability than 5 yrs ago, their feelings of anger persisted. Relationships were found between coping styles, breadth of coping attempted, and emotions experienced. Specifically, a coping style of focusing on symptoms while attempting to maintain previous activity levels characterized people who felt more helpless, depressed, and angry. Those who coped by accommodating to their symptoms had adopted more strategies. Coping strategies involving lifestyle and personal changes were rated as more effective than many treatments and interpersonal strategies. Findings highlight the need for health practitioners to tap into clients' knowledge when designing and evaluating appropriate rehabilitation programs.

Conclusions:

Outcome of Research:

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Category: Psychology

Title: Long-standing poliomyelitis and psychological health
Author: Shiri S (1), Gartsman I, Meiner Z, Schwartz I
Affiliation: Department of Physical Medicine and Rehabilitation, Hadassah-Hebrew University Medical Center, Jerusalem, Israel
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2015 Jul 26:1-5
Publication Year and Month: 2015 07

Abstract: OBJECTIVE: To compare the psychological health of the individuals with long-standing poliomyelitis, with or without post-polio syndrome (PPS), to the general population and to identify the role of work as well as other variables with regard to their psychological health.

DESIGN: A cross-sectional study.

SUBJECTS: One hundred and ninety-five polio patients attending postpolio clinic in Jerusalem.

METHODS: Emotional distress (ED) was measured using the general health questionnaire (GHQ-12). Demographic, medical, social and functional data were recorded using a specific structured questionnaire. Each polio patient was compared to four age- and sex-matched controls.

RESULTS: ED was higher in the polio population as compared to the general population. Within the polio population ED was inversely correlated with work status. No correlation was found between ED and the functional level of polio participants and no difference was found in GHQ score between polio participants with or without post-polio. In addition, ED was less affected by subjective perception of physical health among polio patients as compared to the general population.

Conclusions: Long-standing poliomyelitis is associated with decreased psychological health as compared to the general population. Yet, the resilience of polio survivors is manifested by their ability to block further decline of their psychological health in spite of deterioration in their physical health. Work appears as a significant source of resilience in the polio population.

IMPLICATIONS FOR REHABILITATION: Individuals with long-standing poliomyelitis often suffer from high emotional distress and may benefit from psychotherapy aimed at reducing distress. As active employment status is associated with increased mental health among polio survivors, encouraging participation at work needs to be a significant component of psychotherapeutic programs. Polio survivors, although physically disabled, may be relatively resilient, as their mental health is less affected by their negative health perception. This and other expressions of resilience may serve as a platform for increasing personal growth among them by implementing hope-oriented psychotherapy.

Outcome of Research: Not applicable

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Category: Activity Levels, Psychology,

Title: No reduction of severe fatigue in patients with postpolio syndrome by exercise therapy or cognitive behavioral therapy: results of an RCT
Author: Koopman FS (1), Voorn EL (1), Beelen A (1), Bleijenberg G (2), de Visser M (1), Brehm MA (1), Nollet F (1)
Affiliation: (1) University of Amsterdam, Amsterdam, The Netherlands; (2) Radboud University Medical Centre, Nijmegen, The Netherlands
Journal: Neurorehabilitation & Neural Repair
Citation: Neurorehabil Neural Repair. 2015 Aug 7. pii: 1545968315600271
Publication Year and Month: 2015 08

Abstract: BACKGROUND: People with postpolio syndrome (PPS) commonly experience severe fatigue that persists over time and negatively affects functioning and health-related quality of life (HRQoL).

OBJECTIVES: To study the efficacy of exercise therapy (ET) and cognitive behavioral therapy (CBT) on reducing fatigue and improving activities and HRQoL in patients with PPS.

METHODS: We conducted a multicenter, single-blinded, randomized controlled trial. Over 4 months, severely fatigued patients with PPS received ET, CBT, or usual care (UC). The primary end point (fatigue) was assessed using the subscale fatigue severity of the Checklist Individual Strength (CIS20-F). Secondary end points included activities and HRQoL, which were assessed with the Sickness Impact Profile and the 36-Item Short-Form, respectively. End points were measured at baseline and at 4, 7, and 10 months.

RESULTS: A total of 68 patients were randomized. No differences were observed between the intervention groups and UC group for fatigue (mean differences in CIS20-F score = 1.47, 95%CI = -2.84 to 5.79, for ET versus UC; and 1.87, 95%CI = -2.24 to 5.98, for CBT versus UC), activities, or HRQoL.

Conclusions: Our results demonstrate that neither ET nor CBT were superior to UC in reducing fatigue in severely fatigued PPS patients. Further research should investigate explanations for the lack of efficacy of these 2 currently advised approaches in clinical practice, which may provide clues to improving treatment aimed at reducing fatigue in PPS.

Outcome of Research: More research required

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Category: Psychology

Title: Post-polio sequelae and the psychology of second disability
Author: Frick NM
Affiliation: Not stated
Journal: Orthopedics
Citation: Orthopedics. 1985 Jul; 8(7):851-3
Publication Year and Month: 1985 07

Abstract: Thousands of persons who had poliomyelitis are reporting new physical symptoms that are eroding physical abilities, regained only after strenuous and lengthy rehabilitation, that were thought to have been permanently restored. These symptoms are causing persons to feel they are becoming disabled for a second time by the same disease. These new symptoms are psychologically traumatic also because they are unexpected, their cause is unknown and there is a lack of knowledge and understanding concerning them within the medical community. Society's negative and pejorative attitude toward the disabled is discussed to explain the psychological trauma associated with any first or second disability. Psychological processes that promote acceptance of disability are outlined with special emphasis on the post-polio experience. Post-polio support groups are described as one means to obtain the resources necessary to surmount the physical and psychological difficulties associated with post-polio sequelae.

Conclusions:

Outcome of Research:

Availability of Paper:

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Category: Psychology

Title: Postpoliomyelitis Syndrome: Assessment of Behavioral Features
Author: Donald L. Freidenberg, David Freeman, Steven J. Huber, Jacquelin Perry, Armin Fischer, Wilfred G. Van Gorp and Jeffrey L. Cummings
Affiliation:
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Neuropsychiatry, Neuropsychology, and Behavioral Neurology Vol. 2, No. 4, pp 272-281. 1989
Publication Year and Month: 1989

Abstract: Postpoliomyelitis syndrome (PPS) is an increasingly recognized phenomenon characterized by late-onset weakness, pain, and fatigue. Psychiatric and cognitive disturbances have been noted in postpoliomyelitis patients, but the relationship of these symptoms to PPS is unknown. We examined postpoliomyelitis patients with and without PPS using objective neuropsychological and neuropsychiatric procedures. Our results suggest that disturbances of mood were common and that subtle cognitive deficits also occured in postpoliomyelitis patients. However, patients with PPS did not have greater depression or cognitive deficits compared to postpoliomyelitis patients without PPS. Key Words: Postpoliomyelitis syndrome, Mood disturbances, Cognitive deficits.

Conclusions:

Outcome of Research: Not applicable

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

Comments (if any):

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Category: Psychology

Title: Prevalence and associated features of depression and psychological distress in polio survivors
Author: Tate DG, Forchheimer M, Kirsch N, Maynard F, Roller A
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan Medical Center, Ann Arbor
Journal: Archives of Physical Medicine and Rehabilitation
Citation: Arch Phys Med Rehabil. 1993 Oct;74(10):1056-60
Publication Year and Month: 1993 10

Abstract: This cross-sectional study examines the prevalence of psychological distress and depression among 116 polio survivors. It investigates demographic, medical, and coping differences between subjects with (n = 17) and without (n = 99) these symptoms. Subjects were administered the Brief Symptom Inventory (BSI), the Coping with Disability Inventory (CDI), and a questionnaire about their polio histories. The BSI provided measures of psychological distress and depression that defined the subgroups. The CDI assessed coping behaviors. BSI scores for the overall sample were within the normal range indicating no major distress, depression, nor elevated somatic complaints. Several significant differences were found between the two subgroups. On average, depressed/distressed subjects reported an increase in pain (p < .01) and further deterioration of their medical status since the time of their physical best subsequent to the onset of polio (p < .01). They consistently rated their health as poorer than did nondepressed/nondistressed subjects (p < .001). They also reported less satisfaction with life and their occupational status (p < .001) and displayed poorer coping behaviors combined (p < .001). Selected variables such as life satisfaction, pain, decrease in activity, and current living situation accounted for 51% of the variance when predicting distress and depression among this group of polio survivors.

Conclusions:

Outcome of Research:

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Category: Psychology

Title: Psychological resilience and depressive symptoms in older adults diagnosed with post-polio syndrome
Author: Pierini D, Stuifbergen AK
Affiliation: University of Texas at Austin, School of Nursing, Austin, TX, USA - [email protected]
Journal: Rehabilitation Nursing
Citation: Rehabil Nurs. 2010 Jul-Aug;35(4):167-75
Publication Year and Month: 2010 08

Abstract: Depression is a serious comorbidity in people with disabilities; however, few studies have focused on depressive symptoms in older adults with post-polio syndrome (PPS). This study used a resilience conceptual framework that focused on patient psychosocial strengths to investigate the relationship between psychological resilience factors (e.g., acceptance, self-efficacy, personal resources, interpersonal relationships, self-rated health, spiritual growth, stress management) and depressive symptoms in a large sample (N = 630) of people older than 65 years who were diagnosed with PPS. Forty percent of the sample scored > or = 10 on the Center for Epidemiologic Studies Short Depression Scale (CES-D10), which is a higher percentage than what has been previously cited in other studies; however, 53% of the sample had good or excellent self-rated health, suggesting psychological resilience. Depression scores were regressed on seven selected resilience factors after controlling for functional limitations. Four of the seven variables accounted for 30% of the variance in depressive symptoms, with spiritual growth representing the main predictor (beta = -.26). The implications for rehabilitation nurses in developing a patient-strengths perspective in the assessment and counseling of older adults with PPS are discussed.

Conclusions:

Outcome of Research: Not applicable.

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

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Category: Psychology

Title: Recognizing typical coping styles of polio survivors can improve re-rehabilitation – a commentary
Author: Maynard FM, Roller S
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan Medical Center, Ann Arbor 48109-0491
Journal: American Journal of Physical Medicine & Rehabilitation
Citation: Am J Phys Med Rehabil. 1991 Apr;70(2):70-2
Publication Year and Month: 1991 04

Abstract: This paper does not have an abstract

Conclusions:

Outcome of Research:

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Category: Psychology

Title: Stress and "Type A" Behavior as Precipitants of Post-Polio Sequelae: The Felician/Columbia Survey
Author: Richard L. Bruno, PhD, and Nancy M. Frick, MDiv, LhD
Affiliation:
Journal:
Citation: In LS Halstead and DO Wiechers (Eds.): Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains: March of Dimes Research Foundation, 1987.
Publication Year and Month: 1987

Abstract: A behavioral profile has begun to emerge from studies of persons who survived acute poliomyelitis and are now experiencing post-polio sequelae. Persons who had polio have been shown to be employed full time at four times the rate of the general disabled population (1,2). Persons who had polio have more years of formal education on average than the general population (3), and marry at approximately the same rate as those who are not disabled (4). These data, combined with our own experience with thousands of persons who had polio, indicated that "polio survivors" are competent, hard-driving and time-conscious overachievers who demand perfection in all aspects of their personal, professional, and social lives. It appeared that those who survived polio exhibit "Type A" behavior and would therefore experience chronic emotional stress.

The notion that individuals who had polio exhibit "Type A" behavior and experience chronic stress was thought to be extremely important for an understanding of the pathophysiology and treatment of post-polio sequelae (PPS). Animal studies have demonstrated that stress accelerates the onset of muscle fatigue (5), augments age-related decreases in the terminal axon branch number (6), and accelerates age-related losses of neurons (7). Therefore, this study was designed to test 2 hypotheses: 1) persons who had poliomyelitis exhibit "Type A" behavior and symptoms pathognomonic of chronic stress, and 2) "Type A" behavior and stress precipitate or exacerbate PPS.

Conclusions:

Outcome of Research: Not applicable

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

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Category: Psychology

Title: The psychology of polio as prelude to post-polio sequelae: behavior modification and psychotherapy
Author: Bruno RL, Frick NM
Affiliation: Post-Polio Rehabilitation and Research Service, Kessler Institute for Rehabilitation, East Orange, NJ
Journal: Orthopedics
Citation: Orthopedics. 1991 Nov; 14(11):1185-93
Publication Year and Month: 1991 11

Abstract: Even as the physical causes and treatments for post-polio sequelae (PPS) are being identified, psychological symptoms – chronic stress, anxiety, depression, and compulsive, Type A behavior – are becoming evident in polio survivors. Importantly, these symptoms are not only causing marked distress but are preventing patients from making the lifestyle changes necessary to treat their PPS. Neither clinicians nor polio survivors have paid sufficient attention to the acute polio experience, its conditioning of life-long patterns of behavior, its relationship to the development of PPS, and its effect on the ability of individuals to cope with and treat their new symptoms. We describe the acute polio and post-polio experiences on the basis of patient histories, relate the experience of polio to the development of compulsive, Type A behavior, link these behaviors to the physical and psychological symptoms reported in the National Post-Polio Surveys, and present a multimodal behavioral approach to treatment.

Conclusions:

Outcome of Research:

Availability of Paper: The full text of this paper (as revised 7 February 2000) has been generously made available by Dr Bruno.

Comments (if any):

Link to Paper (if available): Click here to download


There are currently 13 papers in this category.

Category: Psychology

Title: The psychology of polio as prelude to post-polio sequelae: behavior modification and psychotherapy
Author: Bruno RL, Frick NM
Affiliation: Post-Polio Rehabilitation and Research Service, Kessler Institute for Rehabilitation, East Orange, NJ
Journal: Orthopedics
Citation: Orthopedics. 1991 Nov; 14(11):1185-93
Publication Year and Month: 1991 11

Abstract: Even as the physical causes and treatments for post-polio sequelae (PPS) are being identified, psychological symptoms – chronic stress, anxiety, depression, and compulsive, Type A behavior – are becoming evident in polio survivors. Importantly, these symptoms are not only causing marked distress but are preventing patients from making the lifestyle changes necessary to treat their PPS. Neither clinicians nor polio survivors have paid sufficient attention to the acute polio experience, its conditioning of life-long patterns of behavior, its relationship to the development of PPS, and its effect on the ability of individuals to cope with and treat their new symptoms. We describe the acute polio and post-polio experiences on the basis of patient histories, relate the experience of polio to the development of compulsive, Type A behavior, link these behaviors to the physical and psychological symptoms reported in the National Post-Polio Surveys, and present a multimodal behavioral approach to treatment.

Conclusions:

Outcome of Research:

Availability of Paper: The full text of this paper (as revised 7 February 2000) has been generously made available by Dr Bruno.

Comments (if any):

Link to Paper (if available): Click here to download


Category: Psychology

Title: Postpoliomyelitis Syndrome: Assessment of Behavioral Features
Author: Donald L. Freidenberg, David Freeman, Steven J. Huber, Jacquelin Perry, Armin Fischer, Wilfred G. Van Gorp and Jeffrey L. Cummings
Affiliation:
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Neuropsychiatry, Neuropsychology, and Behavioral Neurology Vol. 2, No. 4, pp 272-281. 1989
Publication Year and Month: 1989

Abstract: Postpoliomyelitis syndrome (PPS) is an increasingly recognized phenomenon characterized by late-onset weakness, pain, and fatigue. Psychiatric and cognitive disturbances have been noted in postpoliomyelitis patients, but the relationship of these symptoms to PPS is unknown. We examined postpoliomyelitis patients with and without PPS using objective neuropsychological and neuropsychiatric procedures. Our results suggest that disturbances of mood were common and that subtle cognitive deficits also occured in postpoliomyelitis patients. However, patients with PPS did not have greater depression or cognitive deficits compared to postpoliomyelitis patients without PPS. Key Words: Postpoliomyelitis syndrome, Mood disturbances, Cognitive deficits.

Conclusions:

Outcome of Research: Not applicable

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: Psychology

Title: Post-polio sequelae and the psychology of second disability
Author: Frick NM
Affiliation: Not stated
Journal: Orthopedics
Citation: Orthopedics. 1985 Jul; 8(7):851-3
Publication Year and Month: 1985 07

Abstract: Thousands of persons who had poliomyelitis are reporting new physical symptoms that are eroding physical abilities, regained only after strenuous and lengthy rehabilitation, that were thought to have been permanently restored. These symptoms are causing persons to feel they are becoming disabled for a second time by the same disease. These new symptoms are psychologically traumatic also because they are unexpected, their cause is unknown and there is a lack of knowledge and understanding concerning them within the medical community. Society's negative and pejorative attitude toward the disabled is discussed to explain the psychological trauma associated with any first or second disability. Psychological processes that promote acceptance of disability are outlined with special emphasis on the post-polio experience. Post-polio support groups are described as one means to obtain the resources necessary to surmount the physical and psychological difficulties associated with post-polio sequelae.

Conclusions:

Outcome of Research:

Availability of Paper:

Comments (if any):

Link to Paper (if available):


Category: Activity Levels, Psychology

Title: Exercise therapy and cognitive behavioural therapy to improve fatigue, daily activity performance and quality of life in postpoliomyelitis syndrome: the protocol of the FACTS-2-PPS trial
Author: Koopman FS (1), Beelen A (1), Gerrits KH (2), Bleijenberg G (3), Abma TA (4), de Visser M (5), Nollet F (1)
Affiliation: (1) Department of Rehabilitation, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands; (2) Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, Amsterdam, The Netherlands; (3) Expert Centre Chronic Fatigue Nijmegen, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands;(4) Department of Medical Humanities, VU University Medical Centre, Amsterdam, The Netherlands; (5) Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands - [email protected]
Journal: BioMed Central Neurology
Citation: BMC Neurol. 2010 Jan 18;10:8. doi: 10.1186/1471-2377-10-8
Publication Year and Month: 2010 01

Abstract: BACKGROUND: Postpoliomyelitis Syndrome (PPS) is a complex of late onset neuromuscular symptoms with new or increased muscle weakness and muscle fatigability as key symptoms. Main clinical complaints are severe fatigue, deterioration in functional abilities and health related quality of life. Rehabilitation management is the mainstay of treatment. Two different therapeutic interventions may be prescribed (1) exercise therapy or (2) cognitive behavioural therapy (CBT). However, the evidence on the effectiveness of both interventions is limited. The primary aim of the FACTS-2-PPS trial is to study the efficacy of exercise therapy and CBT for reducing fatigue and improving activities and quality of life in patients with PPS. Additionally, the working mechanisms, patients' and therapists' expectations of and experiences with both interventions and cost-effectiveness will be evaluated.

METHODS/DESIGN: A multi-centre, single-blinded, randomized controlled trial will be conducted. A sample of 81 severely fatigued patients with PPS will be recruited from 3 different university hospitals and their affiliate rehabilitation centres. Patients will be randomized to one of three groups i.e. (1) exercise therapy + usual care, (2) CBT + usual care, (3) usual care. At baseline, immediately post-intervention and at 3- and 6-months follow-up, fatigue, activities, quality of life and secondary outcomes will be assessed. Costs will be based on a cost questionnaire, and statistical analyses on GEE (generalized estimated equations). Analysis will also consider mechanisms of change during therapy. A responsive evaluation will be conducted to monitor the implementation process and to investigate the perspectives of patients and therapists on both interventions.

DISCUSSION: A major strength of the FACTS-2-PPS study is the use of a mixed methods design in which a responsive and economic evaluation runs parallel to the trial. The results of this study will generate new evidence for the rehabilitation treatment of persons with PPS.

TRIAL REGISTRATION: Dutch Trial Register NTR1371.

Conclusions:

Outcome of Research: Not applicable.

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: Activity Levels, Psychology,

Title: No reduction of severe fatigue in patients with postpolio syndrome by exercise therapy or cognitive behavioral therapy: results of an RCT
Author: Koopman FS (1), Voorn EL (1), Beelen A (1), Bleijenberg G (2), de Visser M (1), Brehm MA (1), Nollet F (1)
Affiliation: (1) University of Amsterdam, Amsterdam, The Netherlands; (2) Radboud University Medical Centre, Nijmegen, The Netherlands
Journal: Neurorehabilitation & Neural Repair
Citation: Neurorehabil Neural Repair. 2015 Aug 7. pii: 1545968315600271
Publication Year and Month: 2015 08

Abstract: BACKGROUND: People with postpolio syndrome (PPS) commonly experience severe fatigue that persists over time and negatively affects functioning and health-related quality of life (HRQoL).

OBJECTIVES: To study the efficacy of exercise therapy (ET) and cognitive behavioral therapy (CBT) on reducing fatigue and improving activities and HRQoL in patients with PPS.

METHODS: We conducted a multicenter, single-blinded, randomized controlled trial. Over 4 months, severely fatigued patients with PPS received ET, CBT, or usual care (UC). The primary end point (fatigue) was assessed using the subscale fatigue severity of the Checklist Individual Strength (CIS20-F). Secondary end points included activities and HRQoL, which were assessed with the Sickness Impact Profile and the 36-Item Short-Form, respectively. End points were measured at baseline and at 4, 7, and 10 months.

RESULTS: A total of 68 patients were randomized. No differences were observed between the intervention groups and UC group for fatigue (mean differences in CIS20-F score = 1.47, 95%CI = -2.84 to 5.79, for ET versus UC; and 1.87, 95%CI = -2.24 to 5.98, for CBT versus UC), activities, or HRQoL.

Conclusions: Our results demonstrate that neither ET nor CBT were superior to UC in reducing fatigue in severely fatigued PPS patients. Further research should investigate explanations for the lack of efficacy of these 2 currently advised approaches in clinical practice, which may provide clues to improving treatment aimed at reducing fatigue in PPS.

Outcome of Research: More research required

Availability of Paper: Paid subscription required to view or download full text.

Comments (if any):

Link to Paper (if available): Click here to view Abstract


Category: Psychology

Title: Recognizing typical coping styles of polio survivors can improve re-rehabilitation – a commentary
Author: Maynard FM, Roller S
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan Medical Center, Ann Arbor 48109-0491
Journal: American Journal of Physical Medicine & Rehabilitation
Citation: Am J Phys Med Rehabil. 1991 Apr;70(2):70-2
Publication Year and Month: 1991 04

Abstract: This paper does not have an abstract

Conclusions:

Outcome of Research:

Availability of Paper: The full paper is available from Polio Australia for private study purposes.

Comments (if any):

Link to Paper (if available):


Category: Psychology

Title: Psychological resilience and depressive symptoms in older adults diagnosed with post-polio syndrome
Author: Pierini D, Stuifbergen AK
Affiliation: University of Texas at Austin, School of Nursing, Austin, TX, USA - [email protected]
Journal: Rehabilitation Nursing
Citation: Rehabil Nurs. 2010 Jul-Aug;35(4):167-75
Publication Year and Month: 2010 08

Abstract: Depression is a serious comorbidity in people with disabilities; however, few studies have focused on depressive symptoms in older adults with post-polio syndrome (PPS). This study used a resilience conceptual framework that focused on patient psychosocial strengths to investigate the relationship between psychological resilience factors (e.g., acceptance, self-efficacy, personal resources, interpersonal relationships, self-rated health, spiritual growth, stress management) and depressive symptoms in a large sample (N = 630) of people older than 65 years who were diagnosed with PPS. Forty percent of the sample scored > or = 10 on the Center for Epidemiologic Studies Short Depression Scale (CES-D10), which is a higher percentage than what has been previously cited in other studies; however, 53% of the sample had good or excellent self-rated health, suggesting psychological resilience. Depression scores were regressed on seven selected resilience factors after controlling for functional limitations. Four of the seven variables accounted for 30% of the variance in depressive symptoms, with spiritual growth representing the main predictor (beta = -.26). The implications for rehabilitation nurses in developing a patient-strengths perspective in the assessment and counseling of older adults with PPS are discussed.

Conclusions:

Outcome of Research: Not applicable.

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Category: Psychology

Title: Stress and "Type A" Behavior as Precipitants of Post-Polio Sequelae: The Felician/Columbia Survey
Author: Richard L. Bruno, PhD, and Nancy M. Frick, MDiv, LhD
Affiliation:
Journal:
Citation: In LS Halstead and DO Wiechers (Eds.): Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains: March of Dimes Research Foundation, 1987.
Publication Year and Month: 1987

Abstract: A behavioral profile has begun to emerge from studies of persons who survived acute poliomyelitis and are now experiencing post-polio sequelae. Persons who had polio have been shown to be employed full time at four times the rate of the general disabled population (1,2). Persons who had polio have more years of formal education on average than the general population (3), and marry at approximately the same rate as those who are not disabled (4). These data, combined with our own experience with thousands of persons who had polio, indicated that "polio survivors" are competent, hard-driving and time-conscious overachievers who demand perfection in all aspects of their personal, professional, and social lives. It appeared that those who survived polio exhibit "Type A" behavior and would therefore experience chronic emotional stress.

The notion that individuals who had polio exhibit "Type A" behavior and experience chronic stress was thought to be extremely important for an understanding of the pathophysiology and treatment of post-polio sequelae (PPS). Animal studies have demonstrated that stress accelerates the onset of muscle fatigue (5), augments age-related decreases in the terminal axon branch number (6), and accelerates age-related losses of neurons (7). Therefore, this study was designed to test 2 hypotheses: 1) persons who had poliomyelitis exhibit "Type A" behavior and symptoms pathognomonic of chronic stress, and 2) "Type A" behavior and stress precipitate or exacerbate PPS.

Conclusions:

Outcome of Research: Not applicable

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

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Category: Psychology

Title: Long-standing poliomyelitis and psychological health
Author: Shiri S (1), Gartsman I, Meiner Z, Schwartz I
Affiliation: Department of Physical Medicine and Rehabilitation, Hadassah-Hebrew University Medical Center, Jerusalem, Israel
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2015 Jul 26:1-5
Publication Year and Month: 2015 07

Abstract: OBJECTIVE: To compare the psychological health of the individuals with long-standing poliomyelitis, with or without post-polio syndrome (PPS), to the general population and to identify the role of work as well as other variables with regard to their psychological health.

DESIGN: A cross-sectional study.

SUBJECTS: One hundred and ninety-five polio patients attending postpolio clinic in Jerusalem.

METHODS: Emotional distress (ED) was measured using the general health questionnaire (GHQ-12). Demographic, medical, social and functional data were recorded using a specific structured questionnaire. Each polio patient was compared to four age- and sex-matched controls.

RESULTS: ED was higher in the polio population as compared to the general population. Within the polio population ED was inversely correlated with work status. No correlation was found between ED and the functional level of polio participants and no difference was found in GHQ score between polio participants with or without post-polio. In addition, ED was less affected by subjective perception of physical health among polio patients as compared to the general population.

Conclusions: Long-standing poliomyelitis is associated with decreased psychological health as compared to the general population. Yet, the resilience of polio survivors is manifested by their ability to block further decline of their psychological health in spite of deterioration in their physical health. Work appears as a significant source of resilience in the polio population.

IMPLICATIONS FOR REHABILITATION: Individuals with long-standing poliomyelitis often suffer from high emotional distress and may benefit from psychotherapy aimed at reducing distress. As active employment status is associated with increased mental health among polio survivors, encouraging participation at work needs to be a significant component of psychotherapeutic programs. Polio survivors, although physically disabled, may be relatively resilient, as their mental health is less affected by their negative health perception. This and other expressions of resilience may serve as a platform for increasing personal growth among them by implementing hope-oriented psychotherapy.

Outcome of Research: Not applicable

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Category: Psychology

Title: Coping with the late effects: differences between depressed and nondepressed polio survivors
Author: Tate D, Kirsch N, Maynard F, Peterson C, Forchheimer M, Roller A, Hansen N
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor
Journal: American Journal of Physical Medicine & Rehabilitation
Citation: Am J Phys Med Rehabil. 1994 Feb;73(1):27-35
Publication Year and Month: 1994 02

Abstract: This study examined differences between depressed and nondepressed individuals with a history of paralytic poliomyelitis in terms of demographics, health status and coping strategies. The prevalence of distress and depression in this group of 116 polio survivors was determined. Subjects completed the Brief Symptom Inventory, the Coping with Disability Inventory and a questionnaire concerning their polio histories and self-perceptions of health. Medical assessments were performed by physicians. Only 15.8% of the sample had scores indicating depression and elevated distress. Depressed/distressed polio survivors were more likely to: be living alone, be experiencing further health status deterioration, seek professional help, view their health as poor, report greater pain, be less satisfied with their occupational status and their lives in general and exhibit poorer coping outcome behaviors in relation to their disability. Three factors in coping with the late effects of polio were identified through a factor analysis of the Coping with Disability Inventory: positive self-acceptance, information seeking/sharing about the disability and social activism. Differences between depressed/distressed and other polio survivors were found across these three factors, with depressed/distressed subjects having significantly lower coping scores. These and other results are discussed.

Conclusions:

Outcome of Research:

Availability of Paper: The full paper is available from Polio Australia for private study purposes.

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Category: Psychology

Title: Prevalence and associated features of depression and psychological distress in polio survivors
Author: Tate DG, Forchheimer M, Kirsch N, Maynard F, Roller A
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan Medical Center, Ann Arbor
Journal: Archives of Physical Medicine and Rehabilitation
Citation: Arch Phys Med Rehabil. 1993 Oct;74(10):1056-60
Publication Year and Month: 1993 10

Abstract: This cross-sectional study examines the prevalence of psychological distress and depression among 116 polio survivors. It investigates demographic, medical, and coping differences between subjects with (n = 17) and without (n = 99) these symptoms. Subjects were administered the Brief Symptom Inventory (BSI), the Coping with Disability Inventory (CDI), and a questionnaire about their polio histories. The BSI provided measures of psychological distress and depression that defined the subgroups. The CDI assessed coping behaviors. BSI scores for the overall sample were within the normal range indicating no major distress, depression, nor elevated somatic complaints. Several significant differences were found between the two subgroups. On average, depressed/distressed subjects reported an increase in pain (p < .01) and further deterioration of their medical status since the time of their physical best subsequent to the onset of polio (p < .01). They consistently rated their health as poorer than did nondepressed/nondistressed subjects (p < .001). They also reported less satisfaction with life and their occupational status (p < .001) and displayed poorer coping behaviors combined (p < .001). Selected variables such as life satisfaction, pain, decrease in activity, and current living situation accounted for 51% of the variance when predicting distress and depression among this group of polio survivors.

Conclusions:

Outcome of Research:

Availability of Paper: The full paper is available from Polio Australia for private study purposes.

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Category: Psychology

Title: Illness narratives of persons with post-polio syndrome
Author: Wenneberg S (1), Ahlström G
Affiliation: (1) Department of Caring Sciences, University of Orebro, Sweden
Journal: Journal of Advanced Nursing
Citation: J Adv Nurs. 2000 Feb;31(2):354-61
Publication Year and Month: 2000 02

Abstract: This qualitative study investigated the lifetime illness experience of individuals with the 'late effects' of polio or post-polio syndrome. Fifteen individuals were interviewed twice about their illness experience and the interviews were transcribed verbatim. The empirical material first underwent a categorization process. The preliminary categories generated through this analysis were then condensed into broader categories which in the final analysis gave rise to the following temporal pattern or stages of the illness experience: (1) the acute phase of polio and subsequent treatment and care; (2) rehabilitation and care at institutions for the disabled; (3) adaptation to a new life; (4) living with the post-polio syndrome today, and finally, (5) memories of the past and apprehensions concerning the future. In spite of the difficult experiences of falling ill and slowly recovering from a life-threatening disease, these individuals have had a good life and accomplished most of their ambitions in the areas of work and family life. Their present psychosocial situation is complicated by the symptoms of the post-polio syndrome which make them more vulnerable to stress, but they are able to handle this burden except when any added strain makes it overwhelming. This potential vulnerability may sometimes express itself as a sudden flashback to traumatic polio experiences and it is therefore important that nurses are aware of the illness history of this patient group.

Conclusions:

Outcome of Research: Not applicable

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Category: Psychology

Title: Living with the late effects of disability: a five-year follow-up survey of coping among post-polio survivors
Author: Westbrook M, McIlwain D
Affiliation: Faculty of Health Sciences, The University of Sydney
Journal: Australian Occupational Therapy Journal
Citation: Aust Occup Ther J. 1996 June;43(2):60-71
Publication Year and Month: 1996 06

Abstract: A follow-up survey of 176 people aged 33–77 yrs with postpolio syndrome found that while they were experiencing significantly less anxiety, uncertainty, depression, and helplessness concerning their increasing disability than 5 yrs ago, their feelings of anger persisted. Relationships were found between coping styles, breadth of coping attempted, and emotions experienced. Specifically, a coping style of focusing on symptoms while attempting to maintain previous activity levels characterized people who felt more helpless, depressed, and angry. Those who coped by accommodating to their symptoms had adopted more strategies. Coping strategies involving lifestyle and personal changes were rated as more effective than many treatments and interpersonal strategies. Findings highlight the need for health practitioners to tap into clients' knowledge when designing and evaluating appropriate rehabilitation programs.

Conclusions:

Outcome of Research:

Availability of Paper: The full paper is available from Polio Australia for private study purposes.

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There are currently 13 papers in this category.

Category: Psychology

Title: Stress and "Type A" Behavior as Precipitants of Post-Polio Sequelae: The Felician/Columbia Survey
Author: Richard L. Bruno, PhD, and Nancy M. Frick, MDiv, LhD
Affiliation:
Journal:
Citation: In LS Halstead and DO Wiechers (Eds.): Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains: March of Dimes Research Foundation, 1987.
Publication Year and Month: 1987

Abstract: A behavioral profile has begun to emerge from studies of persons who survived acute poliomyelitis and are now experiencing post-polio sequelae. Persons who had polio have been shown to be employed full time at four times the rate of the general disabled population (1,2). Persons who had polio have more years of formal education on average than the general population (3), and marry at approximately the same rate as those who are not disabled (4). These data, combined with our own experience with thousands of persons who had polio, indicated that "polio survivors" are competent, hard-driving and time-conscious overachievers who demand perfection in all aspects of their personal, professional, and social lives. It appeared that those who survived polio exhibit "Type A" behavior and would therefore experience chronic emotional stress.

The notion that individuals who had polio exhibit "Type A" behavior and experience chronic stress was thought to be extremely important for an understanding of the pathophysiology and treatment of post-polio sequelae (PPS). Animal studies have demonstrated that stress accelerates the onset of muscle fatigue (5), augments age-related decreases in the terminal axon branch number (6), and accelerates age-related losses of neurons (7). Therefore, this study was designed to test 2 hypotheses: 1) persons who had poliomyelitis exhibit "Type A" behavior and symptoms pathognomonic of chronic stress, and 2) "Type A" behavior and stress precipitate or exacerbate PPS.

Conclusions:

Outcome of Research: Not applicable

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: Psychology

Title: Recognizing typical coping styles of polio survivors can improve re-rehabilitation – a commentary
Author: Maynard FM, Roller S
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan Medical Center, Ann Arbor 48109-0491
Journal: American Journal of Physical Medicine & Rehabilitation
Citation: Am J Phys Med Rehabil. 1991 Apr;70(2):70-2
Publication Year and Month: 1991 04

Abstract: This paper does not have an abstract

Conclusions:

Outcome of Research:

Availability of Paper: The full paper is available from Polio Australia for private study purposes.

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Category: Psychology

Title: Coping with the late effects: differences between depressed and nondepressed polio survivors
Author: Tate D, Kirsch N, Maynard F, Peterson C, Forchheimer M, Roller A, Hansen N
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor
Journal: American Journal of Physical Medicine & Rehabilitation
Citation: Am J Phys Med Rehabil. 1994 Feb;73(1):27-35
Publication Year and Month: 1994 02

Abstract: This study examined differences between depressed and nondepressed individuals with a history of paralytic poliomyelitis in terms of demographics, health status and coping strategies. The prevalence of distress and depression in this group of 116 polio survivors was determined. Subjects completed the Brief Symptom Inventory, the Coping with Disability Inventory and a questionnaire concerning their polio histories and self-perceptions of health. Medical assessments were performed by physicians. Only 15.8% of the sample had scores indicating depression and elevated distress. Depressed/distressed polio survivors were more likely to: be living alone, be experiencing further health status deterioration, seek professional help, view their health as poor, report greater pain, be less satisfied with their occupational status and their lives in general and exhibit poorer coping outcome behaviors in relation to their disability. Three factors in coping with the late effects of polio were identified through a factor analysis of the Coping with Disability Inventory: positive self-acceptance, information seeking/sharing about the disability and social activism. Differences between depressed/distressed and other polio survivors were found across these three factors, with depressed/distressed subjects having significantly lower coping scores. These and other results are discussed.

Conclusions:

Outcome of Research:

Availability of Paper: The full paper is available from Polio Australia for private study purposes.

Comments (if any):

Link to Paper (if available):


Category: Psychology

Title: Prevalence and associated features of depression and psychological distress in polio survivors
Author: Tate DG, Forchheimer M, Kirsch N, Maynard F, Roller A
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan Medical Center, Ann Arbor
Journal: Archives of Physical Medicine and Rehabilitation
Citation: Arch Phys Med Rehabil. 1993 Oct;74(10):1056-60
Publication Year and Month: 1993 10

Abstract: This cross-sectional study examines the prevalence of psychological distress and depression among 116 polio survivors. It investigates demographic, medical, and coping differences between subjects with (n = 17) and without (n = 99) these symptoms. Subjects were administered the Brief Symptom Inventory (BSI), the Coping with Disability Inventory (CDI), and a questionnaire about their polio histories. The BSI provided measures of psychological distress and depression that defined the subgroups. The CDI assessed coping behaviors. BSI scores for the overall sample were within the normal range indicating no major distress, depression, nor elevated somatic complaints. Several significant differences were found between the two subgroups. On average, depressed/distressed subjects reported an increase in pain (p < .01) and further deterioration of their medical status since the time of their physical best subsequent to the onset of polio (p < .01). They consistently rated their health as poorer than did nondepressed/nondistressed subjects (p < .001). They also reported less satisfaction with life and their occupational status (p < .001) and displayed poorer coping behaviors combined (p < .001). Selected variables such as life satisfaction, pain, decrease in activity, and current living situation accounted for 51% of the variance when predicting distress and depression among this group of polio survivors.

Conclusions:

Outcome of Research:

Availability of Paper: The full paper is available from Polio Australia for private study purposes.

Comments (if any):

Link to Paper (if available):


Category: Psychology

Title: Living with the late effects of disability: a five-year follow-up survey of coping among post-polio survivors
Author: Westbrook M, McIlwain D
Affiliation: Faculty of Health Sciences, The University of Sydney
Journal: Australian Occupational Therapy Journal
Citation: Aust Occup Ther J. 1996 June;43(2):60-71
Publication Year and Month: 1996 06

Abstract: A follow-up survey of 176 people aged 33–77 yrs with postpolio syndrome found that while they were experiencing significantly less anxiety, uncertainty, depression, and helplessness concerning their increasing disability than 5 yrs ago, their feelings of anger persisted. Relationships were found between coping styles, breadth of coping attempted, and emotions experienced. Specifically, a coping style of focusing on symptoms while attempting to maintain previous activity levels characterized people who felt more helpless, depressed, and angry. Those who coped by accommodating to their symptoms had adopted more strategies. Coping strategies involving lifestyle and personal changes were rated as more effective than many treatments and interpersonal strategies. Findings highlight the need for health practitioners to tap into clients' knowledge when designing and evaluating appropriate rehabilitation programs.

Conclusions:

Outcome of Research:

Availability of Paper: The full paper is available from Polio Australia for private study purposes.

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Category: Activity Levels, Psychology

Title: Exercise therapy and cognitive behavioural therapy to improve fatigue, daily activity performance and quality of life in postpoliomyelitis syndrome: the protocol of the FACTS-2-PPS trial
Author: Koopman FS (1), Beelen A (1), Gerrits KH (2), Bleijenberg G (3), Abma TA (4), de Visser M (5), Nollet F (1)
Affiliation: (1) Department of Rehabilitation, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands; (2) Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, Amsterdam, The Netherlands; (3) Expert Centre Chronic Fatigue Nijmegen, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands;(4) Department of Medical Humanities, VU University Medical Centre, Amsterdam, The Netherlands; (5) Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands - [email protected]
Journal: BioMed Central Neurology
Citation: BMC Neurol. 2010 Jan 18;10:8. doi: 10.1186/1471-2377-10-8
Publication Year and Month: 2010 01

Abstract: BACKGROUND: Postpoliomyelitis Syndrome (PPS) is a complex of late onset neuromuscular symptoms with new or increased muscle weakness and muscle fatigability as key symptoms. Main clinical complaints are severe fatigue, deterioration in functional abilities and health related quality of life. Rehabilitation management is the mainstay of treatment. Two different therapeutic interventions may be prescribed (1) exercise therapy or (2) cognitive behavioural therapy (CBT). However, the evidence on the effectiveness of both interventions is limited. The primary aim of the FACTS-2-PPS trial is to study the efficacy of exercise therapy and CBT for reducing fatigue and improving activities and quality of life in patients with PPS. Additionally, the working mechanisms, patients' and therapists' expectations of and experiences with both interventions and cost-effectiveness will be evaluated.

METHODS/DESIGN: A multi-centre, single-blinded, randomized controlled trial will be conducted. A sample of 81 severely fatigued patients with PPS will be recruited from 3 different university hospitals and their affiliate rehabilitation centres. Patients will be randomized to one of three groups i.e. (1) exercise therapy + usual care, (2) CBT + usual care, (3) usual care. At baseline, immediately post-intervention and at 3- and 6-months follow-up, fatigue, activities, quality of life and secondary outcomes will be assessed. Costs will be based on a cost questionnaire, and statistical analyses on GEE (generalized estimated equations). Analysis will also consider mechanisms of change during therapy. A responsive evaluation will be conducted to monitor the implementation process and to investigate the perspectives of patients and therapists on both interventions.

DISCUSSION: A major strength of the FACTS-2-PPS study is the use of a mixed methods design in which a responsive and economic evaluation runs parallel to the trial. The results of this study will generate new evidence for the rehabilitation treatment of persons with PPS.

TRIAL REGISTRATION: Dutch Trial Register NTR1371.

Conclusions:

Outcome of Research: Not applicable.

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: Psychology

Title: Long-standing poliomyelitis and psychological health
Author: Shiri S (1), Gartsman I, Meiner Z, Schwartz I
Affiliation: Department of Physical Medicine and Rehabilitation, Hadassah-Hebrew University Medical Center, Jerusalem, Israel
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2015 Jul 26:1-5
Publication Year and Month: 2015 07

Abstract: OBJECTIVE: To compare the psychological health of the individuals with long-standing poliomyelitis, with or without post-polio syndrome (PPS), to the general population and to identify the role of work as well as other variables with regard to their psychological health.

DESIGN: A cross-sectional study.

SUBJECTS: One hundred and ninety-five polio patients attending postpolio clinic in Jerusalem.

METHODS: Emotional distress (ED) was measured using the general health questionnaire (GHQ-12). Demographic, medical, social and functional data were recorded using a specific structured questionnaire. Each polio patient was compared to four age- and sex-matched controls.

RESULTS: ED was higher in the polio population as compared to the general population. Within the polio population ED was inversely correlated with work status. No correlation was found between ED and the functional level of polio participants and no difference was found in GHQ score between polio participants with or without post-polio. In addition, ED was less affected by subjective perception of physical health among polio patients as compared to the general population.

Conclusions: Long-standing poliomyelitis is associated with decreased psychological health as compared to the general population. Yet, the resilience of polio survivors is manifested by their ability to block further decline of their psychological health in spite of deterioration in their physical health. Work appears as a significant source of resilience in the polio population.

IMPLICATIONS FOR REHABILITATION: Individuals with long-standing poliomyelitis often suffer from high emotional distress and may benefit from psychotherapy aimed at reducing distress. As active employment status is associated with increased mental health among polio survivors, encouraging participation at work needs to be a significant component of psychotherapeutic programs. Polio survivors, although physically disabled, may be relatively resilient, as their mental health is less affected by their negative health perception. This and other expressions of resilience may serve as a platform for increasing personal growth among them by implementing hope-oriented psychotherapy.

Outcome of Research: Not applicable

Availability of Paper: Paid subscription required to view or download full text.

Comments (if any):

Link to Paper (if available): Click here to view Abstract


Category: Psychology

Title: Illness narratives of persons with post-polio syndrome
Author: Wenneberg S (1), Ahlström G
Affiliation: (1) Department of Caring Sciences, University of Orebro, Sweden
Journal: Journal of Advanced Nursing
Citation: J Adv Nurs. 2000 Feb;31(2):354-61
Publication Year and Month: 2000 02

Abstract: This qualitative study investigated the lifetime illness experience of individuals with the 'late effects' of polio or post-polio syndrome. Fifteen individuals were interviewed twice about their illness experience and the interviews were transcribed verbatim. The empirical material first underwent a categorization process. The preliminary categories generated through this analysis were then condensed into broader categories which in the final analysis gave rise to the following temporal pattern or stages of the illness experience: (1) the acute phase of polio and subsequent treatment and care; (2) rehabilitation and care at institutions for the disabled; (3) adaptation to a new life; (4) living with the post-polio syndrome today, and finally, (5) memories of the past and apprehensions concerning the future. In spite of the difficult experiences of falling ill and slowly recovering from a life-threatening disease, these individuals have had a good life and accomplished most of their ambitions in the areas of work and family life. Their present psychosocial situation is complicated by the symptoms of the post-polio syndrome which make them more vulnerable to stress, but they are able to handle this burden except when any added strain makes it overwhelming. This potential vulnerability may sometimes express itself as a sudden flashback to traumatic polio experiences and it is therefore important that nurses are aware of the illness history of this patient group.

Conclusions:

Outcome of Research: Not applicable

Availability of Paper: Paid subscription required to view or download full text.

Comments (if any):

Link to Paper (if available): Click here to view Abstract


Category: Activity Levels, Psychology,

Title: No reduction of severe fatigue in patients with postpolio syndrome by exercise therapy or cognitive behavioral therapy: results of an RCT
Author: Koopman FS (1), Voorn EL (1), Beelen A (1), Bleijenberg G (2), de Visser M (1), Brehm MA (1), Nollet F (1)
Affiliation: (1) University of Amsterdam, Amsterdam, The Netherlands; (2) Radboud University Medical Centre, Nijmegen, The Netherlands
Journal: Neurorehabilitation & Neural Repair
Citation: Neurorehabil Neural Repair. 2015 Aug 7. pii: 1545968315600271
Publication Year and Month: 2015 08

Abstract: BACKGROUND: People with postpolio syndrome (PPS) commonly experience severe fatigue that persists over time and negatively affects functioning and health-related quality of life (HRQoL).

OBJECTIVES: To study the efficacy of exercise therapy (ET) and cognitive behavioral therapy (CBT) on reducing fatigue and improving activities and HRQoL in patients with PPS.

METHODS: We conducted a multicenter, single-blinded, randomized controlled trial. Over 4 months, severely fatigued patients with PPS received ET, CBT, or usual care (UC). The primary end point (fatigue) was assessed using the subscale fatigue severity of the Checklist Individual Strength (CIS20-F). Secondary end points included activities and HRQoL, which were assessed with the Sickness Impact Profile and the 36-Item Short-Form, respectively. End points were measured at baseline and at 4, 7, and 10 months.

RESULTS: A total of 68 patients were randomized. No differences were observed between the intervention groups and UC group for fatigue (mean differences in CIS20-F score = 1.47, 95%CI = -2.84 to 5.79, for ET versus UC; and 1.87, 95%CI = -2.24 to 5.98, for CBT versus UC), activities, or HRQoL.

Conclusions: Our results demonstrate that neither ET nor CBT were superior to UC in reducing fatigue in severely fatigued PPS patients. Further research should investigate explanations for the lack of efficacy of these 2 currently advised approaches in clinical practice, which may provide clues to improving treatment aimed at reducing fatigue in PPS.

Outcome of Research: More research required

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Category: Psychology

Title: Postpoliomyelitis Syndrome: Assessment of Behavioral Features
Author: Donald L. Freidenberg, David Freeman, Steven J. Huber, Jacquelin Perry, Armin Fischer, Wilfred G. Van Gorp and Jeffrey L. Cummings
Affiliation:
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Neuropsychiatry, Neuropsychology, and Behavioral Neurology Vol. 2, No. 4, pp 272-281. 1989
Publication Year and Month: 1989

Abstract: Postpoliomyelitis syndrome (PPS) is an increasingly recognized phenomenon characterized by late-onset weakness, pain, and fatigue. Psychiatric and cognitive disturbances have been noted in postpoliomyelitis patients, but the relationship of these symptoms to PPS is unknown. We examined postpoliomyelitis patients with and without PPS using objective neuropsychological and neuropsychiatric procedures. Our results suggest that disturbances of mood were common and that subtle cognitive deficits also occured in postpoliomyelitis patients. However, patients with PPS did not have greater depression or cognitive deficits compared to postpoliomyelitis patients without PPS. Key Words: Postpoliomyelitis syndrome, Mood disturbances, Cognitive deficits.

Conclusions:

Outcome of Research: Not applicable

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

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Category: Psychology

Title: Post-polio sequelae and the psychology of second disability
Author: Frick NM
Affiliation: Not stated
Journal: Orthopedics
Citation: Orthopedics. 1985 Jul; 8(7):851-3
Publication Year and Month: 1985 07

Abstract: Thousands of persons who had poliomyelitis are reporting new physical symptoms that are eroding physical abilities, regained only after strenuous and lengthy rehabilitation, that were thought to have been permanently restored. These symptoms are causing persons to feel they are becoming disabled for a second time by the same disease. These new symptoms are psychologically traumatic also because they are unexpected, their cause is unknown and there is a lack of knowledge and understanding concerning them within the medical community. Society's negative and pejorative attitude toward the disabled is discussed to explain the psychological trauma associated with any first or second disability. Psychological processes that promote acceptance of disability are outlined with special emphasis on the post-polio experience. Post-polio support groups are described as one means to obtain the resources necessary to surmount the physical and psychological difficulties associated with post-polio sequelae.

Conclusions:

Outcome of Research:

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Category: Psychology

Title: The psychology of polio as prelude to post-polio sequelae: behavior modification and psychotherapy
Author: Bruno RL, Frick NM
Affiliation: Post-Polio Rehabilitation and Research Service, Kessler Institute for Rehabilitation, East Orange, NJ
Journal: Orthopedics
Citation: Orthopedics. 1991 Nov; 14(11):1185-93
Publication Year and Month: 1991 11

Abstract: Even as the physical causes and treatments for post-polio sequelae (PPS) are being identified, psychological symptoms – chronic stress, anxiety, depression, and compulsive, Type A behavior – are becoming evident in polio survivors. Importantly, these symptoms are not only causing marked distress but are preventing patients from making the lifestyle changes necessary to treat their PPS. Neither clinicians nor polio survivors have paid sufficient attention to the acute polio experience, its conditioning of life-long patterns of behavior, its relationship to the development of PPS, and its effect on the ability of individuals to cope with and treat their new symptoms. We describe the acute polio and post-polio experiences on the basis of patient histories, relate the experience of polio to the development of compulsive, Type A behavior, link these behaviors to the physical and psychological symptoms reported in the National Post-Polio Surveys, and present a multimodal behavioral approach to treatment.

Conclusions:

Outcome of Research:

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Category: Psychology

Title: Psychological resilience and depressive symptoms in older adults diagnosed with post-polio syndrome
Author: Pierini D, Stuifbergen AK
Affiliation: University of Texas at Austin, School of Nursing, Austin, TX, USA - [email protected]
Journal: Rehabilitation Nursing
Citation: Rehabil Nurs. 2010 Jul-Aug;35(4):167-75
Publication Year and Month: 2010 08

Abstract: Depression is a serious comorbidity in people with disabilities; however, few studies have focused on depressive symptoms in older adults with post-polio syndrome (PPS). This study used a resilience conceptual framework that focused on patient psychosocial strengths to investigate the relationship between psychological resilience factors (e.g., acceptance, self-efficacy, personal resources, interpersonal relationships, self-rated health, spiritual growth, stress management) and depressive symptoms in a large sample (N = 630) of people older than 65 years who were diagnosed with PPS. Forty percent of the sample scored > or = 10 on the Center for Epidemiologic Studies Short Depression Scale (CES-D10), which is a higher percentage than what has been previously cited in other studies; however, 53% of the sample had good or excellent self-rated health, suggesting psychological resilience. Depression scores were regressed on seven selected resilience factors after controlling for functional limitations. Four of the seven variables accounted for 30% of the variance in depressive symptoms, with spiritual growth representing the main predictor (beta = -.26). The implications for rehabilitation nurses in developing a patient-strengths perspective in the assessment and counseling of older adults with PPS are discussed.

Conclusions:

Outcome of Research: Not applicable.

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There are currently 13 papers in this category.

Category: Activity Levels, Psychology,

Title: No reduction of severe fatigue in patients with postpolio syndrome by exercise therapy or cognitive behavioral therapy: results of an RCT
Author: Koopman FS (1), Voorn EL (1), Beelen A (1), Bleijenberg G (2), de Visser M (1), Brehm MA (1), Nollet F (1)
Affiliation: (1) University of Amsterdam, Amsterdam, The Netherlands; (2) Radboud University Medical Centre, Nijmegen, The Netherlands
Journal: Neurorehabilitation & Neural Repair
Citation: Neurorehabil Neural Repair. 2015 Aug 7. pii: 1545968315600271
Publication Year and Month: 2015 08

Abstract: BACKGROUND: People with postpolio syndrome (PPS) commonly experience severe fatigue that persists over time and negatively affects functioning and health-related quality of life (HRQoL).

OBJECTIVES: To study the efficacy of exercise therapy (ET) and cognitive behavioral therapy (CBT) on reducing fatigue and improving activities and HRQoL in patients with PPS.

METHODS: We conducted a multicenter, single-blinded, randomized controlled trial. Over 4 months, severely fatigued patients with PPS received ET, CBT, or usual care (UC). The primary end point (fatigue) was assessed using the subscale fatigue severity of the Checklist Individual Strength (CIS20-F). Secondary end points included activities and HRQoL, which were assessed with the Sickness Impact Profile and the 36-Item Short-Form, respectively. End points were measured at baseline and at 4, 7, and 10 months.

RESULTS: A total of 68 patients were randomized. No differences were observed between the intervention groups and UC group for fatigue (mean differences in CIS20-F score = 1.47, 95%CI = -2.84 to 5.79, for ET versus UC; and 1.87, 95%CI = -2.24 to 5.98, for CBT versus UC), activities, or HRQoL.

Conclusions: Our results demonstrate that neither ET nor CBT were superior to UC in reducing fatigue in severely fatigued PPS patients. Further research should investigate explanations for the lack of efficacy of these 2 currently advised approaches in clinical practice, which may provide clues to improving treatment aimed at reducing fatigue in PPS.

Outcome of Research: More research required

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Category: Psychology

Title: Long-standing poliomyelitis and psychological health
Author: Shiri S (1), Gartsman I, Meiner Z, Schwartz I
Affiliation: Department of Physical Medicine and Rehabilitation, Hadassah-Hebrew University Medical Center, Jerusalem, Israel
Journal: Disability and Rehabilitation
Citation: Disabil Rehabil. 2015 Jul 26:1-5
Publication Year and Month: 2015 07

Abstract: OBJECTIVE: To compare the psychological health of the individuals with long-standing poliomyelitis, with or without post-polio syndrome (PPS), to the general population and to identify the role of work as well as other variables with regard to their psychological health.

DESIGN: A cross-sectional study.

SUBJECTS: One hundred and ninety-five polio patients attending postpolio clinic in Jerusalem.

METHODS: Emotional distress (ED) was measured using the general health questionnaire (GHQ-12). Demographic, medical, social and functional data were recorded using a specific structured questionnaire. Each polio patient was compared to four age- and sex-matched controls.

RESULTS: ED was higher in the polio population as compared to the general population. Within the polio population ED was inversely correlated with work status. No correlation was found between ED and the functional level of polio participants and no difference was found in GHQ score between polio participants with or without post-polio. In addition, ED was less affected by subjective perception of physical health among polio patients as compared to the general population.

Conclusions: Long-standing poliomyelitis is associated with decreased psychological health as compared to the general population. Yet, the resilience of polio survivors is manifested by their ability to block further decline of their psychological health in spite of deterioration in their physical health. Work appears as a significant source of resilience in the polio population.

IMPLICATIONS FOR REHABILITATION: Individuals with long-standing poliomyelitis often suffer from high emotional distress and may benefit from psychotherapy aimed at reducing distress. As active employment status is associated with increased mental health among polio survivors, encouraging participation at work needs to be a significant component of psychotherapeutic programs. Polio survivors, although physically disabled, may be relatively resilient, as their mental health is less affected by their negative health perception. This and other expressions of resilience may serve as a platform for increasing personal growth among them by implementing hope-oriented psychotherapy.

Outcome of Research: Not applicable

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Category: Psychology

Title: Psychological resilience and depressive symptoms in older adults diagnosed with post-polio syndrome
Author: Pierini D, Stuifbergen AK
Affiliation: University of Texas at Austin, School of Nursing, Austin, TX, USA - [email protected]
Journal: Rehabilitation Nursing
Citation: Rehabil Nurs. 2010 Jul-Aug;35(4):167-75
Publication Year and Month: 2010 08

Abstract: Depression is a serious comorbidity in people with disabilities; however, few studies have focused on depressive symptoms in older adults with post-polio syndrome (PPS). This study used a resilience conceptual framework that focused on patient psychosocial strengths to investigate the relationship between psychological resilience factors (e.g., acceptance, self-efficacy, personal resources, interpersonal relationships, self-rated health, spiritual growth, stress management) and depressive symptoms in a large sample (N = 630) of people older than 65 years who were diagnosed with PPS. Forty percent of the sample scored > or = 10 on the Center for Epidemiologic Studies Short Depression Scale (CES-D10), which is a higher percentage than what has been previously cited in other studies; however, 53% of the sample had good or excellent self-rated health, suggesting psychological resilience. Depression scores were regressed on seven selected resilience factors after controlling for functional limitations. Four of the seven variables accounted for 30% of the variance in depressive symptoms, with spiritual growth representing the main predictor (beta = -.26). The implications for rehabilitation nurses in developing a patient-strengths perspective in the assessment and counseling of older adults with PPS are discussed.

Conclusions:

Outcome of Research: Not applicable.

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Category: Activity Levels, Psychology

Title: Exercise therapy and cognitive behavioural therapy to improve fatigue, daily activity performance and quality of life in postpoliomyelitis syndrome: the protocol of the FACTS-2-PPS trial
Author: Koopman FS (1), Beelen A (1), Gerrits KH (2), Bleijenberg G (3), Abma TA (4), de Visser M (5), Nollet F (1)
Affiliation: (1) Department of Rehabilitation, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands; (2) Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, Amsterdam, The Netherlands; (3) Expert Centre Chronic Fatigue Nijmegen, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands;(4) Department of Medical Humanities, VU University Medical Centre, Amsterdam, The Netherlands; (5) Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands - [email protected]
Journal: BioMed Central Neurology
Citation: BMC Neurol. 2010 Jan 18;10:8. doi: 10.1186/1471-2377-10-8
Publication Year and Month: 2010 01

Abstract: BACKGROUND: Postpoliomyelitis Syndrome (PPS) is a complex of late onset neuromuscular symptoms with new or increased muscle weakness and muscle fatigability as key symptoms. Main clinical complaints are severe fatigue, deterioration in functional abilities and health related quality of life. Rehabilitation management is the mainstay of treatment. Two different therapeutic interventions may be prescribed (1) exercise therapy or (2) cognitive behavioural therapy (CBT). However, the evidence on the effectiveness of both interventions is limited. The primary aim of the FACTS-2-PPS trial is to study the efficacy of exercise therapy and CBT for reducing fatigue and improving activities and quality of life in patients with PPS. Additionally, the working mechanisms, patients' and therapists' expectations of and experiences with both interventions and cost-effectiveness will be evaluated.

METHODS/DESIGN: A multi-centre, single-blinded, randomized controlled trial will be conducted. A sample of 81 severely fatigued patients with PPS will be recruited from 3 different university hospitals and their affiliate rehabilitation centres. Patients will be randomized to one of three groups i.e. (1) exercise therapy + usual care, (2) CBT + usual care, (3) usual care. At baseline, immediately post-intervention and at 3- and 6-months follow-up, fatigue, activities, quality of life and secondary outcomes will be assessed. Costs will be based on a cost questionnaire, and statistical analyses on GEE (generalized estimated equations). Analysis will also consider mechanisms of change during therapy. A responsive evaluation will be conducted to monitor the implementation process and to investigate the perspectives of patients and therapists on both interventions.

DISCUSSION: A major strength of the FACTS-2-PPS study is the use of a mixed methods design in which a responsive and economic evaluation runs parallel to the trial. The results of this study will generate new evidence for the rehabilitation treatment of persons with PPS.

TRIAL REGISTRATION: Dutch Trial Register NTR1371.

Conclusions:

Outcome of Research: Not applicable.

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Category: Psychology

Title: Illness narratives of persons with post-polio syndrome
Author: Wenneberg S (1), Ahlström G
Affiliation: (1) Department of Caring Sciences, University of Orebro, Sweden
Journal: Journal of Advanced Nursing
Citation: J Adv Nurs. 2000 Feb;31(2):354-61
Publication Year and Month: 2000 02

Abstract: This qualitative study investigated the lifetime illness experience of individuals with the 'late effects' of polio or post-polio syndrome. Fifteen individuals were interviewed twice about their illness experience and the interviews were transcribed verbatim. The empirical material first underwent a categorization process. The preliminary categories generated through this analysis were then condensed into broader categories which in the final analysis gave rise to the following temporal pattern or stages of the illness experience: (1) the acute phase of polio and subsequent treatment and care; (2) rehabilitation and care at institutions for the disabled; (3) adaptation to a new life; (4) living with the post-polio syndrome today, and finally, (5) memories of the past and apprehensions concerning the future. In spite of the difficult experiences of falling ill and slowly recovering from a life-threatening disease, these individuals have had a good life and accomplished most of their ambitions in the areas of work and family life. Their present psychosocial situation is complicated by the symptoms of the post-polio syndrome which make them more vulnerable to stress, but they are able to handle this burden except when any added strain makes it overwhelming. This potential vulnerability may sometimes express itself as a sudden flashback to traumatic polio experiences and it is therefore important that nurses are aware of the illness history of this patient group.

Conclusions:

Outcome of Research: Not applicable

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Category: Psychology

Title: Living with the late effects of disability: a five-year follow-up survey of coping among post-polio survivors
Author: Westbrook M, McIlwain D
Affiliation: Faculty of Health Sciences, The University of Sydney
Journal: Australian Occupational Therapy Journal
Citation: Aust Occup Ther J. 1996 June;43(2):60-71
Publication Year and Month: 1996 06

Abstract: A follow-up survey of 176 people aged 33–77 yrs with postpolio syndrome found that while they were experiencing significantly less anxiety, uncertainty, depression, and helplessness concerning their increasing disability than 5 yrs ago, their feelings of anger persisted. Relationships were found between coping styles, breadth of coping attempted, and emotions experienced. Specifically, a coping style of focusing on symptoms while attempting to maintain previous activity levels characterized people who felt more helpless, depressed, and angry. Those who coped by accommodating to their symptoms had adopted more strategies. Coping strategies involving lifestyle and personal changes were rated as more effective than many treatments and interpersonal strategies. Findings highlight the need for health practitioners to tap into clients' knowledge when designing and evaluating appropriate rehabilitation programs.

Conclusions:

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Category: Psychology

Title: Coping with the late effects: differences between depressed and nondepressed polio survivors
Author: Tate D, Kirsch N, Maynard F, Peterson C, Forchheimer M, Roller A, Hansen N
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor
Journal: American Journal of Physical Medicine & Rehabilitation
Citation: Am J Phys Med Rehabil. 1994 Feb;73(1):27-35
Publication Year and Month: 1994 02

Abstract: This study examined differences between depressed and nondepressed individuals with a history of paralytic poliomyelitis in terms of demographics, health status and coping strategies. The prevalence of distress and depression in this group of 116 polio survivors was determined. Subjects completed the Brief Symptom Inventory, the Coping with Disability Inventory and a questionnaire concerning their polio histories and self-perceptions of health. Medical assessments were performed by physicians. Only 15.8% of the sample had scores indicating depression and elevated distress. Depressed/distressed polio survivors were more likely to: be living alone, be experiencing further health status deterioration, seek professional help, view their health as poor, report greater pain, be less satisfied with their occupational status and their lives in general and exhibit poorer coping outcome behaviors in relation to their disability. Three factors in coping with the late effects of polio were identified through a factor analysis of the Coping with Disability Inventory: positive self-acceptance, information seeking/sharing about the disability and social activism. Differences between depressed/distressed and other polio survivors were found across these three factors, with depressed/distressed subjects having significantly lower coping scores. These and other results are discussed.

Conclusions:

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Category: Psychology

Title: Prevalence and associated features of depression and psychological distress in polio survivors
Author: Tate DG, Forchheimer M, Kirsch N, Maynard F, Roller A
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan Medical Center, Ann Arbor
Journal: Archives of Physical Medicine and Rehabilitation
Citation: Arch Phys Med Rehabil. 1993 Oct;74(10):1056-60
Publication Year and Month: 1993 10

Abstract: This cross-sectional study examines the prevalence of psychological distress and depression among 116 polio survivors. It investigates demographic, medical, and coping differences between subjects with (n = 17) and without (n = 99) these symptoms. Subjects were administered the Brief Symptom Inventory (BSI), the Coping with Disability Inventory (CDI), and a questionnaire about their polio histories. The BSI provided measures of psychological distress and depression that defined the subgroups. The CDI assessed coping behaviors. BSI scores for the overall sample were within the normal range indicating no major distress, depression, nor elevated somatic complaints. Several significant differences were found between the two subgroups. On average, depressed/distressed subjects reported an increase in pain (p < .01) and further deterioration of their medical status since the time of their physical best subsequent to the onset of polio (p < .01). They consistently rated their health as poorer than did nondepressed/nondistressed subjects (p < .001). They also reported less satisfaction with life and their occupational status (p < .001) and displayed poorer coping behaviors combined (p < .001). Selected variables such as life satisfaction, pain, decrease in activity, and current living situation accounted for 51% of the variance when predicting distress and depression among this group of polio survivors.

Conclusions:

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Category: Psychology

Title: The psychology of polio as prelude to post-polio sequelae: behavior modification and psychotherapy
Author: Bruno RL, Frick NM
Affiliation: Post-Polio Rehabilitation and Research Service, Kessler Institute for Rehabilitation, East Orange, NJ
Journal: Orthopedics
Citation: Orthopedics. 1991 Nov; 14(11):1185-93
Publication Year and Month: 1991 11

Abstract: Even as the physical causes and treatments for post-polio sequelae (PPS) are being identified, psychological symptoms – chronic stress, anxiety, depression, and compulsive, Type A behavior – are becoming evident in polio survivors. Importantly, these symptoms are not only causing marked distress but are preventing patients from making the lifestyle changes necessary to treat their PPS. Neither clinicians nor polio survivors have paid sufficient attention to the acute polio experience, its conditioning of life-long patterns of behavior, its relationship to the development of PPS, and its effect on the ability of individuals to cope with and treat their new symptoms. We describe the acute polio and post-polio experiences on the basis of patient histories, relate the experience of polio to the development of compulsive, Type A behavior, link these behaviors to the physical and psychological symptoms reported in the National Post-Polio Surveys, and present a multimodal behavioral approach to treatment.

Conclusions:

Outcome of Research:

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Category: Psychology

Title: Recognizing typical coping styles of polio survivors can improve re-rehabilitation – a commentary
Author: Maynard FM, Roller S
Affiliation: Department of Physical Medicine and Rehabilitation, University of Michigan Medical Center, Ann Arbor 48109-0491
Journal: American Journal of Physical Medicine & Rehabilitation
Citation: Am J Phys Med Rehabil. 1991 Apr;70(2):70-2
Publication Year and Month: 1991 04

Abstract: This paper does not have an abstract

Conclusions:

Outcome of Research:

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Category: Psychology

Title: Postpoliomyelitis Syndrome: Assessment of Behavioral Features
Author: Donald L. Freidenberg, David Freeman, Steven J. Huber, Jacquelin Perry, Armin Fischer, Wilfred G. Van Gorp and Jeffrey L. Cummings
Affiliation:
Journal: NEW - PUT DETAILS IN CITATION FIELD
Citation: Neuropsychiatry, Neuropsychology, and Behavioral Neurology Vol. 2, No. 4, pp 272-281. 1989
Publication Year and Month: 1989

Abstract: Postpoliomyelitis syndrome (PPS) is an increasingly recognized phenomenon characterized by late-onset weakness, pain, and fatigue. Psychiatric and cognitive disturbances have been noted in postpoliomyelitis patients, but the relationship of these symptoms to PPS is unknown. We examined postpoliomyelitis patients with and without PPS using objective neuropsychological and neuropsychiatric procedures. Our results suggest that disturbances of mood were common and that subtle cognitive deficits also occured in postpoliomyelitis patients. However, patients with PPS did not have greater depression or cognitive deficits compared to postpoliomyelitis patients without PPS. Key Words: Postpoliomyelitis syndrome, Mood disturbances, Cognitive deficits.

Conclusions:

Outcome of Research: Not applicable

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Category: Psychology

Title: Stress and "Type A" Behavior as Precipitants of Post-Polio Sequelae: The Felician/Columbia Survey
Author: Richard L. Bruno, PhD, and Nancy M. Frick, MDiv, LhD
Affiliation:
Journal:
Citation: In LS Halstead and DO Wiechers (Eds.): Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains: March of Dimes Research Foundation, 1987.
Publication Year and Month: 1987

Abstract: A behavioral profile has begun to emerge from studies of persons who survived acute poliomyelitis and are now experiencing post-polio sequelae. Persons who had polio have been shown to be employed full time at four times the rate of the general disabled population (1,2). Persons who had polio have more years of formal education on average than the general population (3), and marry at approximately the same rate as those who are not disabled (4). These data, combined with our own experience with thousands of persons who had polio, indicated that "polio survivors" are competent, hard-driving and time-conscious overachievers who demand perfection in all aspects of their personal, professional, and social lives. It appeared that those who survived polio exhibit "Type A" behavior and would therefore experience chronic emotional stress.

The notion that individuals who had polio exhibit "Type A" behavior and experience chronic stress was thought to be extremely important for an understanding of the pathophysiology and treatment of post-polio sequelae (PPS). Animal studies have demonstrated that stress accelerates the onset of muscle fatigue (5), augments age-related decreases in the terminal axon branch number (6), and accelerates age-related losses of neurons (7). Therefore, this study was designed to test 2 hypotheses: 1) persons who had poliomyelitis exhibit "Type A" behavior and symptoms pathognomonic of chronic stress, and 2) "Type A" behavior and stress precipitate or exacerbate PPS.

Conclusions:

Outcome of Research: Not applicable

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Category: Psychology

Title: Post-polio sequelae and the psychology of second disability
Author: Frick NM
Affiliation: Not stated
Journal: Orthopedics
Citation: Orthopedics. 1985 Jul; 8(7):851-3
Publication Year and Month: 1985 07

Abstract: Thousands of persons who had poliomyelitis are reporting new physical symptoms that are eroding physical abilities, regained only after strenuous and lengthy rehabilitation, that were thought to have been permanently restored. These symptoms are causing persons to feel they are becoming disabled for a second time by the same disease. These new symptoms are psychologically traumatic also because they are unexpected, their cause is unknown and there is a lack of knowledge and understanding concerning them within the medical community. Society's negative and pejorative attitude toward the disabled is discussed to explain the psychological trauma associated with any first or second disability. Psychological processes that promote acceptance of disability are outlined with special emphasis on the post-polio experience. Post-polio support groups are described as one means to obtain the resources necessary to surmount the physical and psychological difficulties associated with post-polio sequelae.

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There are currently 13 papers in this category.

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