Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome
Abstract 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 ph...
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doaj-bca6e2791ed4492da7493c3e85dd74f62020-11-25T03:01:04ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202020-07-014111010.1186/s41687-020-00226-5Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndromeVanya Gocheva0Patricia Hafner1Anna-Lena Orsini2Simone Schmidt3Sabine Schaedelin4Nicole Rueedi5Daniela Rubino-Nacht6Peter Weber7Dirk Fischer8Division of Neuropediatrics and Developmental Medicine, University Children’s Hospital of Basel (UKBB),University of BaselDivision of Neuropediatrics and Developmental Medicine, University Children’s Hospital of Basel (UKBB),University of BaselDivision of Neuropediatrics and Developmental Medicine, University Children’s Hospital of Basel (UKBB),University of BaselDivision of Neuropediatrics and Developmental Medicine, University Children’s Hospital of Basel (UKBB),University of BaselDepartment of Clinical Research, Clinical Trial Unit, University Hospital BaselDivision of Neuropediatrics and Developmental Medicine, University Children’s Hospital of Basel (UKBB),University of BaselDivision of Neuropediatrics and Developmental Medicine, University Children’s Hospital of Basel (UKBB),University of BaselDivision of Neuropediatrics and Developmental Medicine, University Children’s Hospital of Basel (UKBB),University of BaselDivision of Neuropediatrics and Developmental Medicine, University Children’s Hospital of Basel (UKBB),University of BaselAbstract 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.http://link.springer.com/article/10.1186/s41687-020-00226-5Post-polio syndromeHealth-related quality of lifeImpairmentsActivities of daily livingPatient-reported outcomesMotor function |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Vanya Gocheva Patricia Hafner Anna-Lena Orsini Simone Schmidt Sabine Schaedelin Nicole Rueedi Daniela Rubino-Nacht Peter Weber Dirk Fischer |
spellingShingle |
Vanya Gocheva Patricia Hafner Anna-Lena Orsini Simone Schmidt Sabine Schaedelin Nicole Rueedi Daniela Rubino-Nacht Peter Weber Dirk Fischer Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome Journal of Patient-Reported Outcomes Post-polio syndrome Health-related quality of life Impairments Activities of daily living Patient-reported outcomes Motor function |
author_facet |
Vanya Gocheva Patricia Hafner Anna-Lena Orsini Simone Schmidt Sabine Schaedelin Nicole Rueedi Daniela Rubino-Nacht Peter Weber Dirk Fischer |
author_sort |
Vanya Gocheva |
title |
Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome |
title_short |
Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome |
title_full |
Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome |
title_fullStr |
Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome |
title_full_unstemmed |
Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome |
title_sort |
health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome |
publisher |
SpringerOpen |
series |
Journal of Patient-Reported Outcomes |
issn |
2509-8020 |
publishDate |
2020-07-01 |
description |
Abstract 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. |
topic |
Post-polio syndrome Health-related quality of life Impairments Activities of daily living Patient-reported outcomes Motor function |
url |
http://link.springer.com/article/10.1186/s41687-020-00226-5 |
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