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Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions

Rare neurological conditions (RNCs) encompass a variety of diseases that differ in progression and symptoms but typically include muscle weakness, sensory and balance impairment and difficulty with coordinating voluntary movement. This can limit overall physical activity, so interventions to address...

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Autores principales: Ramdharry, Gita, Buscemi, Valentina, Boaz, Annette, Dawes, Helen, Jaki, Thomas, Jones, Fiona, Marsden, Jonathan, Paul, Lorna, Playle, Rebecca, Randell, Elizabeth, Robling, Michael, Rochester, Lynn, Busse, Monica
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9397985/
https://www.ncbi.nlm.nih.gov/pubmed/36188845
http://dx.doi.org/10.3389/fresc.2021.705474
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author Ramdharry, Gita
Buscemi, Valentina
Boaz, Annette
Dawes, Helen
Jaki, Thomas
Jones, Fiona
Marsden, Jonathan
Paul, Lorna
Playle, Rebecca
Randell, Elizabeth
Robling, Michael
Rochester, Lynn
Busse, Monica
author_facet Ramdharry, Gita
Buscemi, Valentina
Boaz, Annette
Dawes, Helen
Jaki, Thomas
Jones, Fiona
Marsden, Jonathan
Paul, Lorna
Playle, Rebecca
Randell, Elizabeth
Robling, Michael
Rochester, Lynn
Busse, Monica
author_sort Ramdharry, Gita
collection PubMed
description Rare neurological conditions (RNCs) encompass a variety of diseases that differ in progression and symptoms but typically include muscle weakness, sensory and balance impairment and difficulty with coordinating voluntary movement. This can limit overall physical activity, so interventions to address this are recommended. The aim of this study was to agree a core outcome measurement set for physical activity interventions in people living with RNCs. We followed established guidelines to develop core outcome sets. Broad ranging discussions in a series of stakeholder workshops led to the consensus that (1) physical well-being; (2) psychological well-being and (3) participation in day-to-day activities should be evaluated in interventions. Recommendations were further informed by a scoping review of physical activity interventions for people living with RNCs. Nearly 200 outcome measures were identified from the review with a specific focus on activities or functions (e.g, on lower limb function, ability to perform daily tasks) but limited consideration of participation based outcomes (e.g., social interaction, work and leisure). Follow on searches identified two instruments that matched the priority areas: the Oxford Participation and Activities Questionnaire and the Sources of Self-Efficacy for Physical Activity. We propose these scales as measures to assess outcomes that are particularly relevant to assess when evaluating physical activity interventions mong people with RNCs. Validation work across rare neurological conditions is now required to inform application of this core outcome set in future clinical trials to facilitate syntheses of results and meta-analyses.
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spelling pubmed-93979852022-09-29 Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions Ramdharry, Gita Buscemi, Valentina Boaz, Annette Dawes, Helen Jaki, Thomas Jones, Fiona Marsden, Jonathan Paul, Lorna Playle, Rebecca Randell, Elizabeth Robling, Michael Rochester, Lynn Busse, Monica Front Rehabil Sci Rehabilitation Sciences Rare neurological conditions (RNCs) encompass a variety of diseases that differ in progression and symptoms but typically include muscle weakness, sensory and balance impairment and difficulty with coordinating voluntary movement. This can limit overall physical activity, so interventions to address this are recommended. The aim of this study was to agree a core outcome measurement set for physical activity interventions in people living with RNCs. We followed established guidelines to develop core outcome sets. Broad ranging discussions in a series of stakeholder workshops led to the consensus that (1) physical well-being; (2) psychological well-being and (3) participation in day-to-day activities should be evaluated in interventions. Recommendations were further informed by a scoping review of physical activity interventions for people living with RNCs. Nearly 200 outcome measures were identified from the review with a specific focus on activities or functions (e.g, on lower limb function, ability to perform daily tasks) but limited consideration of participation based outcomes (e.g., social interaction, work and leisure). Follow on searches identified two instruments that matched the priority areas: the Oxford Participation and Activities Questionnaire and the Sources of Self-Efficacy for Physical Activity. We propose these scales as measures to assess outcomes that are particularly relevant to assess when evaluating physical activity interventions mong people with RNCs. Validation work across rare neurological conditions is now required to inform application of this core outcome set in future clinical trials to facilitate syntheses of results and meta-analyses. Frontiers Media S.A. 2021-10-21 /pmc/articles/PMC9397985/ /pubmed/36188845 http://dx.doi.org/10.3389/fresc.2021.705474 Text en Copyright © 2021 Ramdharry, Buscemi, Boaz, Dawes, Jaki, Jones, Marsden, Paul, Playle, Randell, Robling, Rochester and Busse. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Rehabilitation Sciences
Ramdharry, Gita
Buscemi, Valentina
Boaz, Annette
Dawes, Helen
Jaki, Thomas
Jones, Fiona
Marsden, Jonathan
Paul, Lorna
Playle, Rebecca
Randell, Elizabeth
Robling, Michael
Rochester, Lynn
Busse, Monica
Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions
title Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions
title_full Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions
title_fullStr Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions
title_full_unstemmed Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions
title_short Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions
title_sort proposing a core outcome set for physical activity and exercise interventions in people with rare neurological conditions
topic Rehabilitation Sciences
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9397985/
https://www.ncbi.nlm.nih.gov/pubmed/36188845
http://dx.doi.org/10.3389/fresc.2021.705474
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