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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

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 f...

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Autores principales: Gocheva, Vanya, Hafner, Patricia, Orsini, Anna-Lena, Schmidt, Simone, Schaedelin, Sabine, Rueedi, Nicole, Rubino-Nacht, Daniela, Weber, Peter, Fischer, Dirk
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7364696/
https://www.ncbi.nlm.nih.gov/pubmed/32676980
http://dx.doi.org/10.1186/s41687-020-00226-5
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author Gocheva, Vanya
Hafner, Patricia
Orsini, Anna-Lena
Schmidt, Simone
Schaedelin, Sabine
Rueedi, Nicole
Rubino-Nacht, Daniela
Weber, Peter
Fischer, Dirk
author_facet Gocheva, Vanya
Hafner, Patricia
Orsini, Anna-Lena
Schmidt, Simone
Schaedelin, Sabine
Rueedi, Nicole
Rubino-Nacht, Daniela
Weber, Peter
Fischer, Dirk
author_sort Gocheva, Vanya
collection PubMed
description 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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spelling pubmed-73646962020-07-21 Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome Gocheva, Vanya Hafner, Patricia Orsini, Anna-Lena Schmidt, Simone Schaedelin, Sabine Rueedi, Nicole Rubino-Nacht, Daniela Weber, Peter Fischer, Dirk J Patient Rep Outcomes Research 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. Springer International Publishing 2020-07-16 /pmc/articles/PMC7364696/ /pubmed/32676980 http://dx.doi.org/10.1186/s41687-020-00226-5 Text en © The Author(s) 2020 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
spellingShingle Research
Gocheva, Vanya
Hafner, Patricia
Orsini, Anna-Lena
Schmidt, Simone
Schaedelin, Sabine
Rueedi, Nicole
Rubino-Nacht, Daniela
Weber, Peter
Fischer, Dirk
Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome
title 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_short 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
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7364696/
https://www.ncbi.nlm.nih.gov/pubmed/32676980
http://dx.doi.org/10.1186/s41687-020-00226-5
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