Abstract
BackgroundHuntington's disease (HD) is a genetic condition resulting in movement, behavioural and cognitive impairments. People with HD have low levels of physical activity which may be compounded by insufficient support from health‐care professionals.ObjectiveTo evaluate the initial acceptability of a co‐designed tool used within a HD clinic to promote physical activity.DesignCo‐design of a physical activity tool; acceptability evaluation.Setting and participantsCo‐design included people with HD and health‐care professionals. Acceptability was evaluated in a HD clinic in the UK.Main variables studiedA physical activity tool was co‐designed and used within a HD clinic.Main outcome measureAcceptability as assessed by semi‐structured interviews with members of the HD clinic.ResultsForty people visited the HD clinic; 19 were given physical activity advice. Themes around who, where and how promotion of physical activity could take place were identified; concepts of benefits and barriers were threads through each theme.DiscussionWe describe for the first time the co‐design of a HD specific physical activity tool. Our associated acceptability study emphasizes the importance of individualized planning of physical activities in complex neurodegenerative conditions. Perceived barriers were time and lack of knowledge of local resources.ConclusionsA simple tool can support conversations about physical activity with people with HD and is an aid to individualized goal setting. Exploring the use of PAT‐HD within a community setting and development of support systems for health‐care professionals and support workers who are in regular contact with people with HD is required.
Highlights
Huntington's disease (HD) is a single gene neurodegenerative disease resulting in movement, behavioural and cognitive impairments with death occurring, on average, 18 years after onset of motor symptoms in midlife.[1]
We have described for the first time the co-design and initial acceptability of a HD specific physical activity tool (PAT-HD)
PAT-HD was co-designed by people with HD, their families and carers and health-care professionals with expertise in HD and acceptability was evaluated by health-care professionals within a HD specific setting
Summary
Huntington's disease (HD) is a single gene neurodegenerative disease resulting in movement, behavioural and cognitive impairments with death occurring, on average, 18 years after onset of motor symptoms in midlife.[1]. Low levels of physical activity have been identified,[7] and people with HD struggle to regularly take part in physical activity.[8] This lack of uptake of physical activity may be compounded by difficulty accessing support from health-care professionals. People with HD have low levels of physical activity which may be compounded by insufficient support from health-care professionals. Objective: To evaluate the initial acceptability of a co-designed tool used within a HD clinic to promote physical activity. Design: Co-design of a physical activity tool; acceptability evaluation. Main variables studied: A physical activity tool was co-designed and used within a HD clinic. Conclusions: A simple tool can support conversations about physical activity with people with HD and is an aid to individualized goal setting. Exploring the use of PAT-HD within a community setting and development of support systems for health- care professionals and support workers who are in regular contact with people with HD is required
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