Assessment of Caregiver Burden in Huntington’s Disease

Article type: Short Communication

Authors: Yu, Margaret^a | Tan, Kenny^a | Koloms, Kimberly^b | Bega, Danny^{a; *}

Affiliations: [a] Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA | [b] Department of Preventative Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

Correspondence: [*] Correspondence to: Danny Bega, MD, MSCI, 710N Lake Shore Drive, #1124, Chicago, IL 60611, USA. Tel.: +1 312 503 5706; E-mail: dbega@nm.org.

Abstract: Huntington’s disease (HD) is a rare neurodegenerative disease associated with disability and loss of patient independence. The caregivers of HD patients are at high risk for burnout. We aimed to identify variables that impact caregiver burden, as measured by the Modified Caregiver Strain Index (MCSI) and the Huntington’s disease Quality of Life Battery for Carers Short Form (HD-SF). Total functional capacity and being sole caregiver were significantly associated with higher caregiver burden via MCSI. There was not good correlation between MCSI and HDQoLC-SF. This study highlights the need for more research to effectively identify at-risk caregivers for early intervention.

Keywords: Huntington’s disease, caregiver burden, quality of life in caregiving

DOI: 10.3233/JHD-180326

Journal: Journal of Huntington's Disease, vol. 8, no. 1, pp. 111-114, 2019