H48 Caregiver burden: evidence from the Huntington's disease burden of illness (HDBOI) study for Europe. (12th September 2022)

• Record Type: Journal Article
• Authors: Rodriguez-Santana, Idaira; Willock, Rosa; Frank, Samuel; D'Alessio, Barbara; Fuller, Rebecca; Hubberstey, Hayley; Stanley, Cath; Hernandez-Jimenez, Elena; Dolmetsch, Ricardo; Ratsch, Sarah; Ali, Talaha M
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 93(2022)Supplement 1
• Page Start: A79
• Page End: A79
• Publication Date: 2022-09-12
• Subjects: Huntington's disease -- Humanistic Burden -- quality of life (QoL) -- Caregiver -- burden of illness; Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp-2022-ehdn.212
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: Huntington's Disease (HD) is a progressive neurodegenerative disorder which universally requires caregiver support over the patient's lifetime. Caregivers of people with Huntington's Disease (PwHD) experience a large burden which increases with disease progression. This research provides a detailed profile of informal caregivers and explores the impact of HD on caregiver's health related quality of life (HRQoL) using data from the Huntington's Disease Burden of Illness (HDBOI) study. Methods: Demographic and HRQoL data on European caregivers were extracted from the caregiver questionnaire of the HDBOI study. HRQoL was measured using EQ-5D-5L and utility scores were computed using the UK value set. Data was explored descriptively, and differences assessed using ANOVA tests. Results: The analytic sample had 434 informal caregivers, with a mean age of 48.7 years. Most respondents reported to be the main caregiver (90.3%) of the PwHD and to live in the same household (84.3%). The majority of caregivers were a spouse/partner (52.1%), followed by a parent (18.6%) or a child (7.3%). A total of 23 (5.3%) caregivers were assisted by a contracted care professional. Caregivers who live in the same household with the PwHD reported worse HRQoL with respect to those who do not, 0.87 vs. 0.91 [p< 0.05]. Similarly, caregivers who received professional support reported better QoL scores than those who did not, 0.87 vs. 0.90 [p> 0.05]. Conclusion: Our results offer a profile of caregivers of PwHD, quantify the humanistic burden associated with caregiving duties and highlight that interventions aimed at supporting the needs of HD caregivers are required.