Qualidade de vida relacionada com a saúde em sobreviventes turcos da pólio: impacto pós‐pólio na saúde relacionada com a qualidade de vida em termos de estado funcional, gravidade da dor, fadiga e funcionamento social e emocional

Garip, Yeşim; Eser, Filiz; Bodur, Hatice; Başkan, Bedriye Mermerci; Sivas, Filiz; Yılmaz, Özlem

doi:10.1016/j.rbr.2014.12.006

Cited by 9 publications

(7 citation statements)

References 21 publications

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“…Furthermore, our results revealed that patients with PPS reported comparable average HRQOL scores of physical and psychological health compared to healthy adults. Regarding the psychological health, Jacob and Shapira reported in their study normal emotional functioning in patients with PPS which is in line with our finding [ 12 ] .Previous reports on patients with PPS suggest that physical limitations are the major contributing factor to the impaired HRQOL [ 4 , 12 , 20 , 21 , 37 ], therefore our result is inconsistent with previous literature which may be due to our small sample size. The most common measures used in the literature to assess HRQOL were the Nottingham Health Profile [ 38 ] and the Short Form Health Survey [ 39 ].…”

Section: Discussioncontrasting

confidence: 59%

“…Limited PROMs and physical function data are available on disease progression of PPS. The majority of studies so far used cross-sectional research designs measuring HRQOL at a single time point [ 4 , 12 , 20 , 37 ]. In our study a decrease after the 6 months observation was only found for the HRQOL psychological health scores.…”

Section: Discussionmentioning

confidence: 99%

“…To date, little has been reported on if and how different PROMs relate to objectively assessed physical function and its changes over time [ 20 , 21 ]. Therefore, a more comprehensive analysis is warranted of how patient-reported variables such as self-reported impairments related to PPS, HRQOL and activities of daily living are associated to motor function.…”

Section: Introductionmentioning

confidence: 99%

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Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome

Gocheva

Hafner

Orsini

et al. 2020

J Patient Rep Outcomes

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Background The symptoms of post-polio syndrome (PPS) and its resulting disabilities can affect quality of life and the ability to perform daily activities. No study has comprehensively analysed how various patient-reported outcome measures (PROMs) are associated with objectively assessed physical function in patients with PPS. Aim To investigate health-related quality of life (HRQOL), self-reported impairments and activities of daily living during 6 months and evaluate their association with clinical muscle function outcomes in individuals with PPS. Methods Twenty-seven patients with PPS were included in the study. At baseline and 6 months, patients were administered PROMs measuring HRQOL (WHOQOL-BREF), self-reported impairments related to PPS (SIPP-RS) and activities of daily living (IBM-FRS). Clinical muscle function outcomes included 6 min walking distance (6MWD) and motor function measure (MFM). Results There were no changes in self-reported impairments (25.52 to 24.93, p = 0.40), activities of daily living (33.89 to 33.30, p = 0.20), 6MWD (391.52 to 401.85, p = 0.30) and MFM (83.87 to 85.46, p = 0.14) during 6 months, while the HRQOL psychological health decreased during this period (76.85 to 72.38, p = 0.05). A strong association was found between activities of daily living and clinical muscle function outcomes (6MWD: ß = 0.02, 95% CI: 0.02;0.03, t = 6.88, p < 0.01; MFM: ß = 0.25, 95% CI: 0.17;0.33, t = 6.69, p < 0.01). Self-reported impairments and HRQOL domains were not associated with the clinical muscle outcomes. Conclusions Study findings indicate that objectively measured walking and motor abilities do not reflect patient’s perspectives of their HRQOL and impairment due to PPS. More research is needed to assess changes over time and capture clinically meaningful changes in individuals with PPS and to increase the understanding of how the patient’s perspective of disability measured by PROMs is related to objectively measured walking and motor abilities. Trial registration ClinicalTrials.gov Identifier ( NCT02801071 ) registered June 15, 2016.

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Section: Discussioncontrasting

confidence: 59%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome

Gocheva

Hafner

Orsini

et al. 2020

J Patient Rep Outcomes

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“…In a QOL study of lower-limb amputees conducted in Mumbai, India, using the 36-Item Short Form Health Survey (SF-36) [6], the physical and mental scores were significantly lower among amputees than among the general population. One Turkish study [25] comparing patients with post-polio syndrome and a control group without post-polio syndrome reported lower QOL in physical mobility, pain, and energy for post-polio patients [25].…”

Section: Discussionmentioning

confidence: 99%

Quality of life of prosthetic and orthotic users in South India: a cross-sectional study

Magnusson

Ghosh²,

Jensen

et al. 2019

Health Qual Life Outcomes

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BackgroundThe aim of this study was to compare QOL among people in India using lower-limb prostheses or orthoses with people without disability. A further aim was to compare subgroups and investigate whether QOL was associated with physical disability, gender, income, living area, and education.MethodsA cross-sectional questionnaire study in which the World Health Organization Quality of Life-Bref was used to collect self-reported data. A total of 277 participants from India were included, 155 with disability and 122 without. Group comparisons were conducted using the Mann–Whitney U and the Kruskal–Wallis tests and associations were explored using regression analyses of the four QOL domains: physical health, psychological, social relationships, and environment.ResultsParticipants with physical disability scored significantly lower than did participants without disability in three of the four QOL domains, i.e., physical health, (Median 14.29 vs 16.29; p < .001) psychological, (Median 14.67 vs. 15.33; p = .017) and environment (Median13.00 vs 14.00; p = .006). For people with disability those with no or irregular income and those not attending school having the lowest QOL scores in all four domains. Education was associated with all four QOL domains and income was associated with psychological and environment. Living in urban slums was associated with a higher risk of lower QOL in three QOL domains, i.e., physical health, psychology, and environment.ConclusionsDespite rehabilitation services, people with physical disability experienced lower QOL in terms of the physical health, psychological, and environmental domains than did people without disability. Community-based rehabilitation programmes for prosthetic and orthotic users need to increase and improve their rehabilitation services to increase income and improve access to education. Priority could be given to those who have no or irregular income, live in urban slums, and have not attended school to further improve their QOL.

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“…Fatigue is the most common and most disabling complaint of patients with PPS. [23] It is often accompanied by depression, with a prevalence ranging from 48% to 93%. [24] Patients reported that fatigue begins gradually and then progresses into a persistent decrease in endurance, tiredness, and lack of energy.…”

Section: Clinical Manifestationsmentioning

confidence: 99%

Postpolio syndrome: A review of lived experiences of patients

Oluwasanmi

Mckenzie

Adewole

et al. 2019

Int J App Basic Med Res

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Postpolio syndrome (PPS) refers to a group of conditions that are present in patients, years after recovery from initial acute paralytic poliomyelitis. About 15%–80% of 20 million polio survivors worldwide will experience exacerbation of symptoms which typically appear 15–30 years after the resolution of initial poliomyelitis. Symptoms include new muscle weakness, fatigue, myalgia, joint pain, dysphagia, and difficulty breathing. Other reported symptoms include cold intolerance, sleep disorder, dysphonia, loss of stamina, musculoskeletal deformities, cardiovascular disorders, psychosocial problems, and restless legs syndrome. These symptoms are attributed to the superimposed neuronal loss of aging with inflammatory mechanisms, but without any convincing evidence of viral reactivation. Risk factors include female gender, respiratory symptoms, normal aging, permanent disability caused by motor neuron damage, muscle overuse and disuse, aging, and immunologic mechanisms. Hypothyroidism-induced myopathy and fibromyalgia are a differential diagnosis for PPS, and exclusion diagnosis is required as confirmatory criteria for PPS. The symptoms of PPS presented determine the course of management.

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Qualidade de vida relacionada com a saúde em sobreviventes turcos da pólio: impacto pós‐pólio na saúde relacionada com a qualidade de vida em termos de estado funcional, gravidade da dor, fadiga e funcionamento social e emocional

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

Cited by 9 publications

References 21 publications

Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome

Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome

Quality of life of prosthetic and orthotic users in South India: a cross-sectional study

Postpolio syndrome: A review of lived experiences of patients

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