Objective: To evaluate the impact of Huntington’s disease (HD) on health-related quality of life (HRQoL) for individuals with HD and care partners in Canada.
Background: The cognitive, behavioral, and motor symptoms of HD have been shown to substantially reduce the HRQoL of patients and care partners in the USA and Europe. However, HRQoL in the Canadian context has not been evaluated.
Method: An online survey was distributed through the Huntington Society of Canada and Société Huntington du Québec from September 14-November 23, 2020. The survey evaluated demographic and clinical characteristics, HRQoL, and care partner burden. Patient HRQoL was assessed using the SF-36v1 (transformed to a 0-100 scale) and care partner HRQoL was assessed using the Caregiver Strain Index (CSI; scale 0-13) and the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C; transformed to a percentage).
Results: Overall, 62 patients/proxies and 48 caregivers met study inclusion criteria selecting adults with HD and care partners with healthcare decision-making responsibilities. The mean (SD) age of patient respondents was 51.2 (13.8) years, and 71.0% were male. The mean (SD) age of care partner respondents was 58.1 (13.9) years and 75.6% were female. Over half (54.2%) of the patient respondents reported they have not transitioned suggesting that they had not experienced motor progression, while most care partners (74.5%) reported the individuals in their care had motor progression. Overall, the highest HRQoL burden (lowest SF-36v1 score) was in the role limitations due to physical health domain (mean [SD] score: 46.8 [42.9]) and the lowest burden was in the bodily pain domain (mean [SD] score: 74.1 [27.3]). HRQoL decreased significantly across domains for respondents who had motor progression compared to those who had not (p<0.05), except for mental health and bodily pain. Among care partners, the mean (SD) CSI score was 6.9 (3.8) and 55.3% of respondents scored >7, indicating high stress/burden. Care partners highest and lowest HRQoL-C results were observed in the Life Satisfaction section (mean [SD]: 62.1 [21.3]) and Feelings/Coping section (mean [SD]: 45.1 [17.9]), respectively.
Conclusion: This study quantified the substantial burden that HD places on the HRQoL of both individuals with HD and caregivers in Canada, which addresses a critical knowledge gap and expands the current HRQoL literature.
To cite this abstract in AMA style:
N. Budd, T. Mestre, E. Shaw, M. Mayer, P. Ekwaru, S. Mcmullen, E. Graves, J. Wu, B. Maturi, T. Cowling. Evaluation of Health-Related Quality of Life for Individuals with Huntington’s Disease and Care Partners in Canada [abstract]. Mov Disord. 2021; 36 (suppl 1). https://www.mdsabstracts.org/abstract/evaluation-of-health-related-quality-of-life-for-individuals-with-huntingtons-disease-and-care-partners-in-canada/. Accessed June 15, 2025.« Back to MDS Virtual Congress 2021
MDS Abstracts - https://www.mdsabstracts.org/abstract/evaluation-of-health-related-quality-of-life-for-individuals-with-huntingtons-disease-and-care-partners-in-canada/