Objective: We aim to identify and characterize caregiver burden among HD caregivers, to see what aspects of HD caregiving are associated with the greatest burden and have highest impact on QoL.

Background: Huntington’s disease (HD) is a rare neurodegenerative disease associated with progressive cognitive and motor disability and loss of independence. The caregivers of HD patients are at high risk for burnout and suffer reduced quality of life (QoL). Identifying at-risk caregivers and the factors that lead to the most reduction in QoL is crucial for early intervention.

Method: Caregivers of established patients with HD seen at Northwestern University HD clinic from January to April of 2017 were approached about participation in a caregiver burden survey which included the Modified Caregiver Strain Index (MCSI), the Huntington’s disease Quality of Life Battery for Carers Short Form (HD-SF), and several demographic questions. Total Functional Capacity (TFC) of the associated patient was also recorded. Simple linear regression analysis was utilized to assess the effect of variables with suspected impact on caregiver burden to both MCSI and HD-SF.

Results: 20/20 caregivers that were approached responded. Lower TFC score was associated with greater caregiver burden on MCSI (r=-0.46,p=0.04) but not on HD-SF (r=0.002, p=0.994). The only other variable that correlated with burden was being the main carer on MCSI (p value=0.04, limited by only two participants in the non-main carer group). Inter-study correlation coefficient between HD-SF and MCSI was not statistically significant (r=-0.157, p=0.5076).

Conclusion: Given the lack of significant findings, either our population is not representative or the scales for assessing for burden in this population are unreliable or fail to capture what drives caregiver burden. This area requires more research and further investigation into screening caregivers for early intervention and determining the appropriate scales for doing so.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/assessment-of-caregiver-burden-in-huntingtons-disease/