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

ABSTRACT:

Background

Huntington's disease (HD) has been shown to reduce health-related quality of life (HRQoL) and affect healthcare resource utilization (HRU) among patients and care partners internationally but has not been studied specifically in the Canadian context.

Objective

To characterize the burden of HD on individuals with HD and care partners of individuals with HD in Canada.

Methods

An online survey was distributed (September 14-November 23, 2020) through patient organizations to collect data on demographic and clinical characteristics, as well as: HRQoL, measured using the 36-Item Short-Form Health Survey (SF-36v1); HRU, measured using the Client Service Receipt Inventory (CSRI); and care partner burden, measured using the Caregiver Strain Index (CSI) and Huntingto

SUBMITTER: Shaw E 

PROVIDER: S-EPMC9277690 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature