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Published on: December 10, 2021
The societal cost of Huntington's disease: are we underestimating the burden?
C Jones1, M Busse2, L Quinn3,4
1Centre for Health Economics and Medicines Evaluation, Bangor University, Bangor, UK. c.l.jones@bangor.ac.uk.
Insights
The annual cost of Huntington's disease (HD) care in the UK is substantial, driven primarily by informal care. Understanding these costs is crucial for effective health and social support planning for HD patients and their carers.
Area of Science:
- Health Economics
- Neurodegenerative Diseases
- Social Care Research
Background:
- Huntington's disease (HD) affects approximately 9000 individuals in the UK, necessitating continuous health and social care.
- A significant knowledge gap exists regarding the specific costs associated with health and social care utilization for HD patients within the UK.
Purpose of the Study:
- To estimate the economic burden of Huntington's disease in the UK.
- To quantify the costs of health and social care services utilized by individuals with HD.
Main Methods:
- Utilized data from the European Huntington's Disease Network REGISTRY study for 131 UK patients in 2013.
- Applied national unit costs for health and social care services specific to the 2013 price year.
Main Results:
- The mean annual cost per person with Huntington's disease was estimated at £21,605.
- Informal care represented the largest cost component, accounting for 65% (£14,085) of the total annual cost per person.
Conclusions:
- Informal care is the primary driver of costs throughout all stages of Huntington's disease.
- Future service planning for individuals with HD must incorporate the needs and support requirements of their informal carers.
Background And Purpose:
Approximately 9000 people in the UK are affected by Huntington's disease (HD). People with HD require ongoing health and social care support. There is a knowledge gap about costs of health and social care use associated with HD in the UK. This paper estimates the economic cost in the UK.
Methods:
Data on UK patients for the year 2013 were extracted from the European Huntington's Disease Network REGISTRY study, a full clinical dataset, including the full medical history and medication history for patients with HD. National unit costs for the price year 2013 were applied to health and social care services.
Results:
Data were available for 131 people. The mean annual cost per person with HD was £21 605. The largest proportion of this cost (65%) was due to informal care (£14 085).
Conclusions:
Informal care was the largest driver of costs across all stages of HD; thus there is a need to also consider the needs of carers when planning services for people with HD.
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