H47 Toward understanding caregivers burden determinants and reliefs in Huntington’s disease: a longitudinal clustering analysis of patient/caregiver pairs

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Background Caregivers’ burden is largely acknowledged in Huntington’s disease (HD) but the factors that may impact its level and evolution over time remain unclear in the absence of longitudinal studies. Aims To identify the components of caregiver burden in HD and provide insights on potential levers for relieving it. Methods We conducted a prospective multicenter longitudinal study in caregiver/patient pairs between March 2011 and May 2015. Caregiver data, derived from two questionnaires at one-year interval on perceived burden (Zarit Burden Interview), were linked to clinical and demographic data from patients included in the Biomarker study. An unsupervised clustering analysis was performed using self-organizing maps (SOM). Results 105 caregiver/patient pairs were included in the analysis. Out of the four clusters identified, two included patients with advanced disease stages: in Cluster A (N=30; 29%) characterized by high levels in irritability and obsessive-compulsive behaviors scores, burden was heavy and increased over time, while burden was low and relieved over time in Cluster B (N=22; 21%), where patients’ apathy levels were the highest. Clusters C (N=27; 26%) and D (N=26; 25%) consisted of patients at earlier stages with low to moderate impairments, and contrasted burden levels and evolution: stable in Cluster C but increasing in Cluster D along with a marked increase in patients’ depression scores. Conclusions Our findings revealed complex dynamics influencing caregivers’ perceived burden, demonstrating the importance of patients’ stage and level of impairment, but also highlighting the influence of specific psychiatric and behavioral disorders and their changes over time.

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