Background A range of interventions including physiotherapy, speech and language therapy, occupational therapy and pharmacological treatments are recommended as helpful to many individuals with Huntington’s disease (HD) towards reducing the impact of disease effects on quality of life (Dickson and Weller 2011) but evidence in support of these suggested benefits is sufficiently poor that it continues to be reported that there is no effective treatment for HD (Khakh and Sofroniew 2014). Currently no treatment has been shown to halt or slow progression of the disorder (Aron, Tsebetkov, Finkbeiner, 2013).

In the absence of hard evidence for effective interventions, this study examined what helps people live with HD from the perspective of patients, family caregivers and health professionals.

Aims To establish what helps people live with HD from their own perspective and those of family caregivers and health professionals.

Method Concept mapping: a process involving brainstorming, sessions to identify important factors captured in concise statements, prioritising of statements, and clustering, or grouping of statements. Analysis utilised ‘Ariadne®’ software, which produces a graphic ‘concept map’. Participants: Brainstorming: 30 professionals, 29 people with HD, 31 caregivers. Prioritising and clustering: 19 people with HD, 20 professionals, 26 caregivers. Total: n = 126.

Results Specialist HD knowledge and expertise among professionals, expert assessment and treatment for comorbid mental health problems and flexible care provision were prioritised among 94 identified factors, grouped into ten clusters.

Conclusions This understanding can contribute towards future studies designed to establish priorities in research and practice aimed at improving life for people with HD.

References Aron R, Tsvetkov A, Finkbeiner S. NUB1 snubs huntingtin toxicity, Nature Neuroscience 2013;16(5):523-5

Dickson D, Weller R. Neurodegeneration: The Molecular Pathology of Dementia and Movement Disorders. Hoboken, NJ: Wiley-Blackwell. 2011

Khakh B, Sofroniew M. Astrocytes and Huntington’s disease, Neuroscience, 2014.doi.org/10.1021/cn500100r