Abstract/Summary

Background Multidisciplinary care has been advocated for Juvenile-onset Huntington's Disease but there has been no detailed analysis of this. Objectives To evaluate the current economic costs of providing health care for patients with Juvenile-onset Huntington's disease (JoHD) and to model the effects and economic costs of providing a multidisciplinary team (MDT) approach. Methods Patients were recruited through the patients’ organization, the Huntington's Disease Association, and specialist Huntington's disease clinics. Thirty-three adapted Client Service Receipt Inventories were completed following either a telephone or in-person interview. The effects of delivering two models of providing a systematic MDT approach, traditional in-person MDT and digital MDT were assessed. Results The overall mean JoHD cost to the NHS per year (2020) was £126,966 which varied according to disease severity, costing just under £11,000 in mild disease, £132,419 in moderate disease, and £221,797 in advanced JoHD. The proportion of indirect costs to families and carers was 64% for mild disease and 17% for advanced disease. Assuming a 50% reduction in health care professionals seen, the alternative models saw reduction costs of £2490 and £2730, respectively. Conclusion We document the high cost of care in JoHD, particularly as the disease progresses towards the later stages. We present estimates from modeling the effects of providing a systematic MDT approach to the care of patients and families with JoHD. These data have clear implications in the consideration of future JoHD models of care in an increasingly digital age and can be developed further as disease modifying treatments become available.