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Jones U1, Hamana K1, Busse M2
1Cardiff University, School of Healthcare Sciences, Cardiff, United Kingdom, 2Cardiff University, Centre for Trials Research, Cardiff, United Kingdom
Background: Huntington's disease (HD) is an autosomal dominant neurodegenerative condition leading to movement, behaviour and cognitive impairments. Exercise is known to be feasible, safe and beneficial for people with HD, yet despite a growing body of evidence recommending regular exercise, people with HD are often inactive. As HD is a rare and complex condition, physiotherapists may need support in promoting physical activity (PA) with people with HD. A co-production approach that integrates existing research findings with needs identified by people with HD, their carers and healthcare professionals (HCPs) is required to develop such support.
Purpose: The aim was to develop a tool to promote PA, (PAT-HD), based on existing research and feedback from people with HD, their carers, HCPs and specialist HD advisors for use with people with HD.
Methods: A co-production approach was used to address the aim. People with HD (n = 8), their family (n= 10), HCPs (n=6) and specialist HD advisors (n=4) attended an event with three bespoke activities in the United Kingdom. Activity 1: groups generated a compilation of activities suitable for people with HD. Activity 2: groups completed a prototype PA tool based on a scenario. Activity 3: Attendees provided feedback on the prototype PA tool. A more detailed PA tool was subsequently developed and reviewed at a Huntington's Disease Association family day attended by 104 members of the HD community.
Results: The final version of PAT-HD tool is an A4 double sided leaflet suitable for HCPs to use as an intervention to prompt discussion and personalised planning for PA participation.
The front page of PAT-HD provides prompts for HCPs to discuss the benefits of PA and explore appropriate activities for a person with HD. Examples of activities were generated from activity 1. The second page of PAT-HD focusses on developing a PA plan for the person with HD. The questions for the HCP to ask encompass a motivational interviewing guiding style where they elicit (and record on the PAT-HD) the person's preferences, what is important to them and why, what they do now, barriers to changing their PA participation and support they may need to make the changes. Feedback gained in activity 3 informed the type of language and approach used in the tool. A user guide was developed from information generated in activity 2.
Conclusion(s): A co-production approach ensured that PAT-HD is a suitable resource for HCPs to promote PA for people with HD. The personalised approach to developing a PA plan offers flexibility for people to change plans over time, as their needs, abilities and PA goals change over the life cycle of the disease. To this end PAT-HD encourages a collaborative regulation approach to supporting PA, which is important for continued PA participation in HD.
Implications: Tools to promote PA can be co-produced for people with specific health conditions, using existing evidence bases and input from people with health conditions and people involved in their care. Further work is needed to operationalise change in practice and monitor its impact.
Keywords: PhysicalActvity, Co-production, Plan
Funding acknowledgements: This study was funded by the Huntington's Disease Association of England and Wales.
Purpose: The aim was to develop a tool to promote PA, (PAT-HD), based on existing research and feedback from people with HD, their carers, HCPs and specialist HD advisors for use with people with HD.
Methods: A co-production approach was used to address the aim. People with HD (n = 8), their family (n= 10), HCPs (n=6) and specialist HD advisors (n=4) attended an event with three bespoke activities in the United Kingdom. Activity 1: groups generated a compilation of activities suitable for people with HD. Activity 2: groups completed a prototype PA tool based on a scenario. Activity 3: Attendees provided feedback on the prototype PA tool. A more detailed PA tool was subsequently developed and reviewed at a Huntington's Disease Association family day attended by 104 members of the HD community.
Results: The final version of PAT-HD tool is an A4 double sided leaflet suitable for HCPs to use as an intervention to prompt discussion and personalised planning for PA participation.
The front page of PAT-HD provides prompts for HCPs to discuss the benefits of PA and explore appropriate activities for a person with HD. Examples of activities were generated from activity 1. The second page of PAT-HD focusses on developing a PA plan for the person with HD. The questions for the HCP to ask encompass a motivational interviewing guiding style where they elicit (and record on the PAT-HD) the person's preferences, what is important to them and why, what they do now, barriers to changing their PA participation and support they may need to make the changes. Feedback gained in activity 3 informed the type of language and approach used in the tool. A user guide was developed from information generated in activity 2.
Conclusion(s): A co-production approach ensured that PAT-HD is a suitable resource for HCPs to promote PA for people with HD. The personalised approach to developing a PA plan offers flexibility for people to change plans over time, as their needs, abilities and PA goals change over the life cycle of the disease. To this end PAT-HD encourages a collaborative regulation approach to supporting PA, which is important for continued PA participation in HD.
Implications: Tools to promote PA can be co-produced for people with specific health conditions, using existing evidence bases and input from people with health conditions and people involved in their care. Further work is needed to operationalise change in practice and monitor its impact.
Keywords: PhysicalActvity, Co-production, Plan
Funding acknowledgements: This study was funded by the Huntington's Disease Association of England and Wales.
Topic: Neurology; Health promotion & wellbeing/healthy ageing
Ethics approval required: Yes
Institution: Cardiff University
Ethics committee: School of Healthcare Sciences Research Ethics Committee
Ethics number: 494
All authors, affiliations and abstracts have been published as submitted.
