Analysis of Huntington Disease Caregiver Quality of Life Using the Enroll-HD Population

Huntington disease (HD) is a neurodegenerative condition inherited in an autosomal dominant manner caused by a CAG triplet repeat expansion within the HTT gene. Thus, HD is unique among neurodegenerative disorders with a caregiver population often burdened by both the caregiver role and concern over transmission to at-risk relatives. This study characterized caregiver quality of life over time using the Enroll-HD study population, an observational cohort with data collected from 171study sites across 20 countries. Self-reported quality of life measures from 3,591 caregiver/patient dyads at the first/baseline Enroll-HD appointment, 192 dyads at the third annual appointment, and 49 dyads at the fifth annual appointment were assessed. We found that at baseline and the third visit, HD caregivers reported negative feelings regarding their caregiver role, quality of life, and how others behave towards their loved one. By the fifth visit, they reported improvement in quality of life and social stresses related to caring for an HD patient. There were no demographic subgroups uniquely associated with quality of life over time. These results are consistent with previous HD caregiver quality of life studies and the use of a large, diverse caregiver population means that our results are applicable to the international HD community in ways that were previously unfeasible. They also highlight the need for targeted caregiver intervention and assistance by practitioners, genetic counselors, and social workers at various points throughout HD progression