The production of meaningful evidence about the effectiveness of complex care delivery interventions requires clear definition and consistent use of outcomes that matter to key stakeholders (service users and professionals). Outcomes for the evaluation of such interventions in multifaceted neurodegenerative progressive conditions, such as Huntington’s disease (HD) have not been previously reviewed.Objective
The objectives of this article are 1) to comprehensively map outcomes reported in the existing literature on care delivery interventions in HD and 2) to identify any convergences/divergences in patterns and stakeholder perspectives across the identified outcomes.Main results
A total of 16 studies and supplementary documents were identified measuring 48 outcomes. These were categorised into three outcome categories, 34 outcome types and 47 variables. Only two outcome types, ’Specialist Knowledge and understanding’ and ’Confidence’, previously suggested by service users as important (n=10) were considered in formal care delivery evaluations.Conclusion
A large number of outcomes are currently measured and suggested in the evaluation and description of care delivery in HD. This outcome map highlights the inconsistent use of outcomes important to and suggested by key stakeholders. Clear understanding of what intervention mechanisms and interactions may be relevant (and to whom) and produce desired outcomes is missing in existing literature.