Year: 2024
Type: conference-abstract
Abstract: Background Huntington’s disease (HD) significantly impacts quality of life (QoL), but limited research exists on QoL among HD patients in nursing homes (NHs). Aims To explore QoL among HD patients in NHs and identify associated factors. Methods A cross-sectional study with 90 HD patients in Dutch HD-specialized NHs using the Manchester Short Assessment of QoL (MANSA, range 1 - 7). The MANSA was administered through structured face-to-face interviews, with participants rating their satisfaction on 12 life domain items. Higher scores indicate better QoL. We examined various demographic, disease-related, functional, and psychosocial variables, using multiple linear regression analyses to identify which variables were associated with QoL. Results Participants reported moderate to high QoL (mean = 5.26) as assessed with the MANSA. Mean satisfaction was >5 across most life domains, with the lowest scores in the Sexual life domain (mean = 4.60). Only a less depressed mood (β = -0.25, SE = 0.09, p = 0.008) and more impaired awareness of functional deficits (β = 0.01, SE = 0.005, p = 0.047) were significantly associated with higher QoL. Conclusions HD patients in NHs expressed relatively high QoL. Unlike in other HD outpatient studies, variables such as functional capacity and neuropsychiatric symptoms other than depression were not significantly associated with QoL, possibly due to differences in study population and assessment instruments. The current findings highlight the importance of addressing psychological well-being in advanced HD stages. Furthermore, special attention should be given to sexuality and intimacy, given the relatively low scores in this domain.
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402373697