Huntington’s Disease Pathway

Huntington’s disease (HD) is a genetic neurodegenerative disease and is characterised by motor disorder, emotional changes and cognitive decline. Prevalence of HD in the UK is estimated to be one in 10,000 (Evans et al. 2013). The onset of the disease usually happens in mid-adulthood and the neurological decline takes place over a 15- to 20-year period after the initial onset of the symptoms (Dale et al. 2014). Unfortunately, at present, there is no treatment available to slow or prevent the progression of the disease, but a number of potential disease-modifying treatments are under development (Tabizi et al. 2013).

Thematic Analysis of Data

As a result of the thematic analysis of the interview data six key themes emerged: pathway architecture; from person-centred care to family- centred care, patient flow; information flow; resource flow; emotional flows; and co-production of care. Sub-themes were also identified. The analysis and discussion of the data are presented within these key themes.