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

Research output: Contribution to Journal/Magazine › Journal article › peer-review

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Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions. / Ramdharry, Gita; Buscemi, Valentina; Boaz, Annette et al.
In: Frontiers in Rehabilitation Sciences, Vol. 2, 705474, 21.10.2021.

Research output: Contribution to Journal/Magazine › Journal article › peer-review

Harvard

Ramdharry, G, Buscemi, V, Boaz, A, Dawes, H, Jaki, T, Jones, F, Marsden, J, Paul, L, Playle, R, Randell, E, Robling, M, Rochester, L & Busse, M 2021, 'Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions', Frontiers in Rehabilitation Sciences, vol. 2, 705474. https://doi.org/10.3389/fresc.2021.705474

APA

Ramdharry, G., Buscemi, V., Boaz, A., Dawes, H., Jaki, T., Jones, F., Marsden, J., Paul, L., Playle, R., Randell, E., Robling, M., Rochester, L., & Busse, M. (2021). Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions. Frontiers in Rehabilitation Sciences, 2, Article 705474. Advance online publication. https://doi.org/10.3389/fresc.2021.705474

Vancouver

Ramdharry G, Buscemi V, Boaz A, Dawes H, Jaki T, Jones F et al. Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions. Frontiers in Rehabilitation Sciences. 2021 Oct 21;2:705474. Epub 2021 Oct 21. doi: 10.3389/fresc.2021.705474

Author

Ramdharry, Gita ; Buscemi, Valentina ; Boaz, Annette et al. / Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions. In: Frontiers in Rehabilitation Sciences. 2021 ; Vol. 2.

Bibtex

@article{6f576be5a84d497d8896d2664ebecce8,
title = "Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions",
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. [Abstract copyright: Copyright {\textcopyright} 2021 Ramdharry, Buscemi, Boaz, Dawes, Jaki, Jones, Marsden, Paul, Playle, Randell, Robling, Rochester and Busse.]",
keywords = "inherited ataxias, hereditary spastic paraplegia, outcome measurement instruments, parkinsonism, Huntington's disease, physical activity, motor neurone disease, neuromuscular disease",
author = "Gita Ramdharry and Valentina Buscemi and Annette Boaz and Helen Dawes and Thomas Jaki and Fiona Jones and Jonathan Marsden and Lorna Paul and Rebecca Playle and Elizabeth Randell and Michael Robling and Lynn Rochester and Monica Busse",
year = "2021",
month = oct,
day = "21",
doi = "10.3389/fresc.2021.705474",
language = "English",
volume = "2",
journal = "Frontiers in Rehabilitation Sciences",
issn = "2673-6861",
publisher = "Frontiers Media S.A.",

}

RIS

TY - JOUR

T1 - Proposing a Core Outcome Set for Physical Activity and Exercise Interventions in People With Rare Neurological Conditions

AU - Ramdharry, Gita

AU - Buscemi, Valentina

AU - Boaz, Annette

AU - Dawes, Helen

AU - Jaki, Thomas

AU - Jones, Fiona

AU - Marsden, Jonathan

AU - Paul, Lorna

AU - Playle, Rebecca

AU - Randell, Elizabeth

AU - Robling, Michael

AU - Rochester, Lynn

AU - Busse, Monica

PY - 2021/10/21

Y1 - 2021/10/21

N2 - 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. [Abstract copyright: Copyright © 2021 Ramdharry, Buscemi, Boaz, Dawes, Jaki, Jones, Marsden, Paul, Playle, Randell, Robling, Rochester and Busse.]

AB - 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. [Abstract copyright: Copyright © 2021 Ramdharry, Buscemi, Boaz, Dawes, Jaki, Jones, Marsden, Paul, Playle, Randell, Robling, Rochester and Busse.]

KW - inherited ataxias

KW - hereditary spastic paraplegia

KW - outcome measurement instruments

KW - parkinsonism

KW - Huntington's disease

KW - physical activity

KW - motor neurone disease

KW - neuromuscular disease

U2 - 10.3389/fresc.2021.705474

DO - 10.3389/fresc.2021.705474

M3 - Journal article

C2 - 36188845

VL - 2

JO - Frontiers in Rehabilitation Sciences

JF - Frontiers in Rehabilitation Sciences

SN - 2673-6861

M1 - 705474

ER -