Drew, Cheney  ORCID: https://orcid.org/0000-0002-4397-6252, Munnery, Kim, Jacob, Nina, Milosevic, Sarah ORCID: https://orcid.org/0000-0003-1973-8286, Wood, Fiona and Busse, Monica ORCID: https://orcid.org/0000-0002-5331-5909
2024.
J027 - Developing lifestyle interventions for Huntington?s disease: results of a consultation on intervention development with key relevant groups [Abstract].
Journal of Neurology, Neurosurgery and Psychiatry
95
, A171.
10.1136/jnnp-2024-EHDN.348
|
Abstract
Abstract Background Healthy lifestyle behaviours are potentially important for reducing the impact of Huntington’s disease (HD). Lifestyle interventions may have a role to play in improving quality of life for people with HD, but there is scant information available to determine what these interventions should look like. Aims We wanted to gather consensus from key groups on what are the most important factors to include in lifestyle interventions for people with HD with a view to developing a theory driven co-produced lifestyle intervention to improve quality of life. Methods We developed an eDelphi survey consisting of 54 items covering intervention content, delivery and training and outcome measurements. Key relevant groups were invited to take part in the survey. Participants were asked to rank each statement in terms of its importance from 1 ‘Limited importance’ to 9 ‘critical to include’. Responses were analysed to determine if statements were ‘consensus in’ or ‘consensus out’. Statements ranked neither ‘in’ nor ‘out’ were included in a second round of the survey. Consensus meetings were convened after round two to discuss remaining ambiguity. Results We received 57 scored responses in round one and 54 scored responses in round two. Participants ranked flexibility of the intervention and personal tailoring as very important, with tailoring accounting for disease stage, familiarity with technology and personal preferences or needs. Conclusions We have successfully engaged with patients, family members, researchers and health professionals in a co-production process. Our findings can be used to design meaningful lifestyle interventions for people with HD.
| Item Type: | Short Communication |
|---|---|
| Date Type: | Publication |
| Status: | Published |
| Schools: | Schools > Medicine Research Institutes & Centres > Centre for Trials Research (CNTRR) |
| Publisher: | BMJ Publishing Group |
| ISSN: | 0022-3050 |
| Funders: | JPND |
| Last Modified: | 20 Jan 2026 16:35 |
| URI: | https://orca.cardiff.ac.uk/id/eprint/184046 |
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