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Costs of Illness for Huntington's Disease: A Systematic Review
Divya Patil1, Emily F Gorman2, T Joseph Mattingly3
1University of Maryland School of Pharmacy, Baltimore, MD, USA.
Insights
The economic burden of Huntington's disease (HD) increases significantly with disease progression, with caregiver costs being the most substantial. Outpatient care costs are higher than inpatient costs, especially in early and middle stages of HD.
Area of Science:
- Neuroscience
- Health Economics
- Medical Sociology
Background:
- Huntington's disease (HD) imposes a substantial financial burden on patients and healthcare systems.
- Understanding the economic impact across different disease stages is crucial for resource allocation and policy development.
Purpose of the Study:
- To identify and quantify the costs associated with Huntington's disease (HD) at various stages of its progression.
- To analyze the trends and significant cost drivers throughout the disease's clinical trajectory.
Main Methods:
- A systematic literature search was conducted across major databases (Medline, Embase, Scopus, Cochrane Library).
- Full-text articles reporting HD-specific costs were included, with costs standardized across early, middle, and late stages using Shoulson Fahn and Barthel Index scores.
- Five studies from the USA, UK, and Peru were included for data extraction and synthesis.
Main Results:
- Inpatient, outpatient, drug, and caregiving costs escalate significantly as Huntington's disease (HD) progresses.
- Outpatient costs were approximately 2.5 times higher than inpatient costs in the early and middle stages of HD.
- Annual caregiver costs represent the most significant economic burden, ranging from $6041 (early stage) to $133,200 (late stage), with notable variations observed between countries.
Conclusions:
- Outpatient care is a critical component, with associated costs exceeding inpatient expenses in earlier disease phases.
- Healthcare costs for Huntington's disease (HD) increase non-linearly and rapidly in advanced stages.
- Caregiver burden represents a major cost, particularly in late-stage HD, highlighting the need for consistent methodologies and further research in cost assessment.
Background:
Huntington's disease (HD) is associated with significant financial burden for patients and payers. The objective was to identify and quantify costs of HD by stage of disease progression.
Methods:
A systematic search of Medline, Embase, Scopus, and Cochrane Library was used to identify types of costs that are frequently reported for individuals diagnosed with HD and to quantify those costs across early, middle, and late stages of HD. Full-text, original research articles were included if they reported costs specific to HD burden. To standardize stage-level costs, Shoulson Fahn and Barthel Index scores were combined to estimate the cost for early, middle-, and late-stage HD.
Results:
A total of 692 abstracts were identifie,d and following abstract screening, a total of 80 full-text articles were reviewed for inclusion. Only five studies were included for extraction and synthesis including three from the USA, one from the United Kingdom (UK), and one from Peru. Annual inpatient, outpatient, drug costs, and caregiving costs all increased substantially as disease progressed. Outpatient costs were approximately 2.5 times greater than inpatient costs for early and middle stages of HD. Among all the costs associated with HD, annual caregiver cost emerges as the most significant costs in the economic burden of HD, ranging from a minimum of $6041 for early stage to a maximum of $133,200 for late-stage HD. Significant variation was observed across studies, especially comparing costs observed in Peru with the USA and UK.
Conclusion:
Outpatient costs exceed inpatient costs, especially in early and middle stages, underscoring the importance of outpatient care. All costs seem to rise rapidly, in a nonlinear fashion, as patients advance to later stages. While only two studies reported caregiver burden, these costs were significanly higher in the most severe stage, where patients were completely dependent on a caregiver. This review highlights the complexity of cost assessment in HD and underscores the need for consistent methods and further research to guide effective policy actions.
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