Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions.
Authors
Ramdharry, Gita
Buscemi, Valentina
Boaz, Annette
Dawes, Helen
Jones, Fiona
Marsden, Jonathan
Paul, Lorna
Playle, Rebecca
Randell, Elizabeth
Robling, Michael
Rochester, Lynn
Busse, Monica
Publication Date
2021Journal Title
Front Rehabil Sci
ISSN
2673-6861
Publisher
Frontiers Media SA
Volume
2
Language
en
Type
Other
This Version
VoR
Metadata
Show full item recordCitation
Ramdharry, G., Buscemi, V., Boaz, A., Dawes, H., Jaki, T., Jones, F., Marsden, J., et al. (2021). Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions.. [Other]. https://doi.org/10.3389/fresc.2021.705474
Abstract
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.
Keywords
Rehabilitation Sciences, physical activity, neuromuscular disease, motor neurone disease, Huntington's disease, inherited ataxias, hereditary spastic paraplegia, parkinsonism, outcome measurement instruments
Identifiers
External DOI: https://doi.org/10.3389/fresc.2021.705474
This record's DOI: https://doi.org/10.17863/CAM.77719
Rights
Licence:
http://creativecommons.org/licenses/by/4.0/
Statistics
Total file downloads (since January 2020). For more information on metrics see the
IRUS guide.