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.
Abstract

Related Concept Videos

Cardiomyopathy III: Hypertrophic Cardiomyopathy01:29

Cardiomyopathy III: Hypertrophic Cardiomyopathy

Hypertrophic cardiomyopathy, or HCM, is an autosomal dominant genetic disorder characterized by asymmetric left ventricular hypertrophy without ventricular dilation. It is more common in men and is typically diagnosed in young, athletic adults.EtiologyHCM is primarily genetic and is caused by mutations in genes encoding sarcomeric proteins. Researchers have identified over 1400 mutations across at least 11 different genes. Among these, the most frequently occurring mutations are found in the...
618
Genetic Lingo01:11

Genetic Lingo

Overview
116.8K
Alzheimer's Disease: Overview01:26

Alzheimer's Disease: Overview

Alzheimer's Disease (AD) is a continually advancing neurodegenerative disorder, distinguished by escalating memory loss, cognitive dysfunction, and dementia. The disease unfolds in three stages: preclinical, mild cognitive impairment (MCI), and dementia. Its onset is insidious, and the progression gradual, with the cause not well explained by other disorders.
The clinical diagnosis of AD hinges on the presence of memory and other cognitive impairments. Biomarkers, such as changes in Aβ...
1.9K
Biological Causes of Schizophrenia01:29

Biological Causes of Schizophrenia

Schizophrenia, a severe psychiatric disorder, arises from a complex interplay of biological factors, including genetic predisposition, structural brain abnormalities, neurotransmitter dysregulation, and developmental irregularities. These factors collectively contribute to the onset and progression of the disorder, which typically manifests in late adolescence or early adulthood.
Genetic Factors in Schizophrenia
The genetic basis of schizophrenia is strongly supported by family and twin...
933
Alzheimer's Disease: Treatment01:22

Alzheimer's Disease: Treatment

Alzheimer's Disease (AD), a neurodegenerative disorder, is pathologically identified by amyloid plaques and neurofibrillary tangles composed of tau protein. AD pharmacotherapy aims to manage cognitive symptoms, delay disease progression, and treat behavioral symptoms. The treatment is primarily symptomatic and palliative, with no definitive disease-modifying therapy available. Cholinesterase inhibitors, including donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne), are...
1.1K
Parkinson's Disease: Overview01:15

Parkinson's Disease: Overview

Neurodegenerative disorders are progressive diseases that cause irreversible damage and loss to neurons in specific brain areas. Examples of these disorders include Parkinson's disease, Alzheimer's disease, Multiple Sclerosis (MS), and Amyotrophic Lateral Sclerosis (ALS). These disorders share characteristics such as proteinopathies, selective neuronal vulnerability, and a complex interplay between genetic and environmental factors. The primary therapeutic goal for these conditions is...
2.3K