A Concept Map of What Helps People with HD Live with their Condition

Abstract

Background: The complex effects of Huntington’s disease (HD) negatively impact on every area of independent living. The perspectives of people impacted by HD on how to best manage the disease are not clearly understood.

Objective: To identify what is most helpful for living with HD from the perspectives of people with HD, family caregivers and health professionals.

Methods: A cross-sectional, mixed methods concept mapping methodology was used. Participants generated statements during brainstorming in response to the question ‘what helps people with HD live with their condition’. Participants then prioritised statements for importance and they grouped together statements that were related into clusters. Concept mapping software (‘Ariadne’ ^®) used multi-dimensional scaling and hierarchical cluster analysis to produce a conceptual framework of participants views about what is helpful for people living with HD.

Results: Thirty nine people at various stages of HD disease progression, 48 family caregivers and 39 health professionals with experience of HD care (n = 126) participated. The most helpful factors for living with HD were identified as access to expert assessment and treatment for co-morbid mental health problems, integrated specialist multi-disciplinary HD expertise, and the provision of flexible care.

Conclusions: HD requires specialist, expert, multidisciplinary care teams to manage it well. Specialists need to focus on the mental health aspects, and the provision must be flexible and responsive to current needs. Patients may have impaired insight into their abilities (e.g. driving) or the need for interventions, so carers’ opinions should also be respected.