Postpolio syndrome: a challenge to the health-care system

Bouza, Carmen; Muñoz, Ana; Amate, José Marı́a

doi:10.1016/j.healthpol.2004.06.001

Cited by 16 publications

(17 citation statements)

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“…Our findings present the patient view of health‐ and social care services and professionals, and their inadequacy suggesting ignorance and disbelief still dominate attitudes towards polio survivors. This has been a long standing issue within the polio literature; however, one that remains a problem (2, 39). Additionally, research by Yorkston et al.…”

Section: Discussionmentioning

confidence: 99%

“…Our findings present the patient view of health-and social care services and professionals, and their inadequacy suggesting ignorance and disbelief still dominate attitudes towards polio survivors. This has been a long standing issue within the polio literature; however, one that remains a problem (2,39). Additionally, research by Yorkston et al (40) found that individuals with long-term conditions wanted healthcare professionals to listen, believe in their experiences and include them in the treatment provision.…”

Section: Discussionmentioning

confidence: 99%

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Living with polio and postpolio syndrome in the United Kingdom

Atwal

Giles

Spiliotopoulou

et al. 2012

Scandinavian Caring Sciences

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Scand J Caring Sci; 2013; 27; 238–245 Living with polio and postpolio syndrome in the United Kingdom The term Postpolio Syndrome (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life in polio survivors. Polio had been eradicated in the United Kingdom (UK) and most of Europe, although this is not the case in all countries. Research in this area has tended to focus upon the impact of polio and PPS on health status and functional health rather than its overall effect on people’s lives. This study’s two main aims were to explore the ways in which polio and PPS in the UK has affected the respondents’ lives and to ascertain their views about how the quality of life could be improved. The two questions were as follows: (1) How has the health of people with polio and PPS affected their quality of life? (2) What would people with polio and PPS change to improve their quality of life? Deductive content analysis using existing qualitative data from a cross‐sectional survey of 336 returned questionnaires from persons with polio and PPS was carried out. The average age of the participants was 54 years. Our research found that polio survivors valued social occupations and participation in family life. Our research has also shown that healthcare professionals still do not understand polio and PPS and this lack of understanding influences their clients’ quality of life. Finances and accessibility of environments also influence participation in chosen occupations. Rehabilitation programmes for people with polio and PPS need to be targeted towards maintaining and improving accessible environments and participation in chosen occupations, and healthcare professionals need to ensure that persons with polio and PPS are referred to persons with specific expertise in this area.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Living with polio and postpolio syndrome in the United Kingdom

Atwal

Giles

Spiliotopoulou

et al. 2012

Scandinavian Caring Sciences

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“…It is estimated that 80% of those with polio will experience PPS symptoms. The aetiology for the development of PPS is not clearly known or even fully accepted but the symptoms of PPS include joint and muscle pain, new muscle atrophy, increased muscular fatigability, general fatigue, cold intolerance and bulbar symptoms . Consequently, polio survivors can feel that they have been disabled for the second time…”

Section: Introductionmentioning

confidence: 99%

Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities

Atwal

Spiliotopoulou

Coleman

et al. 2014

Health Expectations

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IntroductionThe term ‘post‐polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.AimTo gain an in‐depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.MethodSix focus groups were conducted with 51 participants from two regions in England. Data were audio‐taped and analysed using thematic analysis.ResultsOur research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health‐care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.ConclusionIt is suggested that health‐care professionals should consider factors which influence happiness and implement a person‐centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health‐care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.

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“…Irrespective of the degree of recovery, up to 80% have or will develop new neurological symptoms known as post-polio syndrome (PPS), which may lead to significant new functional limitations. 3 Deterioration years after acute polio, first described at Charcot's clinic in 1875, was not seriously researched until the 1980s and 1990s. The 1875 description quoted above includes the classic features of new weakness in the stronger limbs accompanied by muscle fatigue.…”

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confidence: 99%

Post-polio syndrome – polio’s legacy

2010

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One of the first descriptions of late-onset muscle weakness following poliomyelitis was made in 1875 by Raymond, It is estimated that there are currently about 120,000 people in the UK who contracted poliomyelitis and who were mostly forgotten about after the introduction of effective vaccination in the 1950s. 2 Some recovered fully or had mild residual muscular weakness while others had more significant persisting disability. Irrespective of the degree of recovery, up to 80% have or will develop new neurological symptoms known as post-polio syndrome (PPS), which may lead to significant new functional limitations. 3 Deterioration years after acute polio, first described at Charcot's clinic in 1875, was not seriously researched until the 1980s and 1990s. The 1875 description quoted above includes the classic features of new weakness in the stronger limbs accompanied by muscle fatigue. There is now consensus that PPS symptoms usually develop after a stable period of 20 to 40 years following the initial illness, and include muscle weakness, fatigue (general, muscular or mental), muscle and joint pain, new muscle atrophy, sleep and respiratory problems, dysphagia and cold intolerance. As the cohort of polio survivors ages, there is a need for more understanding of this condition and how it can best be managed.The cause of PPS is unknown with the leading hypothesis being that excessive metabolic stress on the remaining enlarged motor units, especially those initially damaged, results in the loss of nerve terminals and eventually of motor neurons themselves. 4,5 Risk factors for developing PPS are greater severity of initial illness, greater degree of recovery or greater impairment, higher activity levels, older age at time of acute illness, female gender, longer interval since acute illness and neuromuscular symptoms (cramps, fasciculations and muscle pain) during the stable period. 6,7 New weakness occurs both in muscles known to have been affected during the initial illness and in those thought to have been unaffected where damage was subclinical. Fatigue is the most common symptom and may include:• a general feeling of exhaustion made worse by activity and improved by rest,• muscle fatigue, felt often as heaviness and aching in the muscles,• mental fatigue, experienced as difficulty processing information.The fatigue is multifactorial and is thought to combine central and peripheral aspects. 8 Muscle pain is usually described as an aching, burning or cramp related to physical activity. Joint pain is often due to weakness around joints, which may lead to bursitis, tendonitis and osteoarthritis. 8 Several studies have looked at the relationship between the weakness, pain and fatigue and found that pain correlates with activity, but not weakness. 9 A subsequent study found that pain was more common in women, and that joint and muscle pain might have different pathologies, as joint pain correlated with initial and recent increased weakness, whereas muscle pain correlated with fatigueability, activity, and younger age ...

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Postpolio syndrome: a challenge to the health-care system

Cited by 16 publications

References 56 publications

Living with polio and postpolio syndrome in the United Kingdom

Living with polio and postpolio syndrome in the United Kingdom

Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities

Post-polio syndrome – polio’s legacy

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