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Disease Burden of Huntington's Disease (HD) on People Living with HD and Care Partners in Canada

Eileen Shaw1, Michelle Mayer1, Paul Ekwaru1

  • 1Medlior Health Outcomes Research Ltd., Calgary, AB, Canada.

Journal of Huntington'S Disease
|March 28, 2022
PubMed

Insights

Huntington's disease significantly impacts quality of life and healthcare use for Canadian patients and their care partners. This study quantifies this burden, highlighting a critical gap in understanding for healthcare access.

Area of Science:

  • Neurology
  • Public Health
  • Health Economics

Background:

  • Huntington's disease (HD) is known internationally to reduce health-related quality of life (HRQoL) and increase healthcare resource utilization (HRU).
  • Previous research has not specifically characterized the burden of HD within the Canadian healthcare context.

Purpose of the Study:

  • To quantify the impact of Huntington's disease on the HRQoL and HRU for individuals with HD and their care partners in Canada.
  • To identify specific areas of burden and strain experienced by patients and caregivers.

Main Methods:

  • An online survey was conducted from September to November 2020, distributed via patient organizations.
  • Data collected included demographics, clinical characteristics, HRQoL (SF-36v1), HRU (CSRI), and care partner burden (CSI, HDQoL-C).
  • Descriptive statistics were used for data analysis and subgroup comparisons.

Main Results:

  • The study included 62 individuals with HD and 48 care partners.
  • Individuals with HD reported the lowest HRQoL in the Role-Physical scale; increased HRU was noted for those experiencing motor onset transition.
  • Over half (55.3%) of care partners reported high strain (CSI), with significant burden on feelings about life (HDQoL-C).

Conclusions:

  • This study provides the first quantification of the substantial burden of Huntington's disease on Canadian patients and care partners.
  • Findings address a critical knowledge gap, informing healthcare service availability and access for this population.
Abstract

Keywords:
Huntington’s diseaseburden of illnesscare giving burdenchronic diseasehealth-related quality of lifeneurodegenerative diseases

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