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Economic Cost of Current and Alternative Models of Multidisciplinary Care of Juvenile-Onset Huntington's Disease
Tracey A Young1, Penny A Curtis2, Jill Thompson2
1Health Economics and Decision Science, Sheffield Centre for Health and Related Research, School of Medicine and Population Health, University of Sheffield, Sheffield, UK.
Insights
Caring for Juvenile-onset Huntington's disease (JoHD) is expensive, especially in later stages. A multidisciplinary team (MDT) approach may offer cost savings and improved care for JoHD patients and families.
Area of Science:
- Neurology
- Health Economics
- Genetics
Background:
- Juvenile-onset Huntington's disease (JoHD) management lacks detailed analysis of multidisciplinary care.
- Advocacy for multidisciplinary care in JoHD exists but requires empirical validation.
Purpose of the Study:
- To assess the current economic burden of healthcare for JoHD patients.
- To model the impact and cost-effectiveness of a multidisciplinary team (MDT) approach for JoHD care.
Main Methods:
- Patients were recruited via patient organizations and specialist clinics.
- Client Service Receipt Inventories were used to collect data through interviews.
- Two MDT models (traditional in-person and digital) were evaluated for their effects and costs.
Main Results:
- The mean annual cost of JoHD care to the NHS in 2020 was £126,966, escalating with disease severity.
- Indirect costs to families ranged from 64% (mild) to 17% (advanced) of total costs.
- Alternative MDT models projected cost reductions of £2490-£2730 with reduced healthcare professional contact.
Conclusions:
- JoHD care incurs significant costs, particularly in advanced stages.
- Modeling suggests a systematic MDT approach can optimize care and potentially reduce costs for JoHD patients and families.
- Findings support the integration of MDT care models, especially digital approaches, for future JoHD management, aligning with advancements in disease-modifying treatments.
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.
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