Background Healthy lifestyle behaviours are important in reducing the impact of Huntington’s Disease (HD). However, evidence to date is limited to singular lifestyle domains. The DOMINO-HD project is focussed on understanding the interplay between lifestyle factors in HD through the conduct of a longitudinal observational study in 100 people with HD.
Aim The next project stage centres on the development of a personalised, data driven, lifestyle intervention that can be used to improve quality of life and reduce disease burden in people with HD. Firstly, we need to understand fundamental aspects governing intervention development in terms of content, delivery, training and measurement.
Methods We will conduct a scoping review to identify physical activity, diet and sleep interventions typically implemented in HD populations. A conceptual synthesis along with a list of statements (for each individual lifestyle domain and any combined domains) describing common intervention components, related outcomes and research design and implementation approaches will be produced. A range of stakeholders (patients, family members and allied health professionals) will be invited to participate in a modified eDelphi process to establish consensus best practice in facilitating feasible lifestyle interventions in HD. Stakeholders will be asked to rank importance of the statements established from the scoping review with due consideration of the emerging DOMINO HD data. A final series of focus groups will be conducted to support the mapping of a lifestyle intervention based on the eDelphi results.
Outcome Co-design of a lifestyle intervention underpinned by a theory driven logic model.
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