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- W4295260630 abstract "<h3>Background</h3> 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. <h3>Methods</h3> 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. <h3>Results</h3> 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]. <h3>Conclusion</h3> 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." @default.
- W4295260630 created "2022-09-12" @default.
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- W4295260630 date "2022-09-01" @default.
- W4295260630 modified "2023-09-28" @default.
- W4295260630 title "H48 Caregiver burden: evidence from the Huntington’s disease burden of illness (HDBOI) study for Europe" @default.
- W4295260630 doi "https://doi.org/10.1136/jnnp-2022-ehdn.212" @default.
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