F19 The cost of juvenile onset huntingdon's disease (JOHD) in the uk. (September 2018) - Young, Tracey
Abstract : Introduction: Huntington's disease patients with onset ≤20 years account for 5% of cases. Estimates of the costs of HD have been published; to date no study has estimated the costs of JOHD. Methods: 33 people with JOHD or their families/carers were interviewed and completed a questionnaire on the use of resources in the past 12 months. Costs were estimated overall and for those with mild, moderate and severe JOHD. Results: The mean age of the people with JOHD was 23 years: 52% were male. There were 10 mild, 7 moderate, 14 severe and two unclassified cases. The majority of costs incurred were due to accessing services. 50% of people accessed accident and emergency mainly because of falls. The majority of costs borne by the person with JOHD or their family were for caring for the person (£26 577). The mean overall cost of JOHD was £1 12 581 per person per year. The average cost to the NHS was £69 368 and 30% of the overall cost to the person with JOHD and their family (Mean=£34 758). Overall costs were lowest for those with mild JOHD (mean=£27 764), and highest for those with severe JHD (mean – £181 523) with moderate JHD costing on average £110 341 per year. Conclusions: A UK study on HD reported cost per year to be £21 605 and included similar resource use: the cost of JOHD is nearly five times more than this. [Research funded by the NHS National Institute for Health Research. Research for Patient Benefit stream. PB-PG-112–29056]