Abstract
Background: The study provides real-world data on the impact of Huntington’s disease (HD) from the perspective of individuals with HD (IHD) and care partners (HD-CP) and contextualizes these results relative to Parkinson’s disease (PD) and the general population (GP). Methods: Cross-sectional survey of IHD and HD-CP in the US (July 2019–August 2019) conducted using the Rare Patient Voice panel. Data for individuals with Parkinson’s Disease (IPD), the general population (GP), and respective care partners (PD-CP; GP-CP) came from the 2018 US National Health and Wellness Survey. Outcomes included demographics, mental health, clinical characteristics, and health-related quality of life (HRQoL). Results: IHD had greater comorbid anxiety (IHD = 51.2%, IPD = 28.8%, GP = 2.0%), and HD-CP had greater comorbid anxiety (HD-CP = 52.5%, PD-CP = 28.6%, GP-CP = 19.6%) and depression (HD-CP = 65.0%, PD-CP = 29.9%, GP-CP = 19.6%), relative to other cohorts (p < 0.05). Respective of their GP cohorts, IHD exhibited lower HRQoL (EQ-5D: 0.66 ± 0.21 vs. 0.81 ± 0.17) and greater depression (PHQ-9: 11.59 ± 7.20 vs. 5.85 ± 6.71), whereas HD-CP exhibited greater depression only (PHQ-9: 6.84 ± 6.38 vs. 4.15 ± 5.58) (p < 0.001). No differences were observed between HD/HD-CP and PD/PD-CP cohorts on PHQ-9 or HRQoL. Conclusions: HD has a significant burden on patients and care partners, which is higher than GP. Notably, anxiety and depression were greater among HD vs. PD, despite similar HRQoL.
Highlights
Huntington’s disease (HD) is a progressive, autosomal dominant, inherited neurodegenerative disorder affecting as many as 13.7 per 100,000 individuals based on worldwide prevalence estimates [1,2,3]
individuals with HD (IHD) respondents did not differ from the matched general population (GP)
While care management services are an integral part of healthcare service delivery in HD [50,51,52], studies suggest that healthcare and social support needs for HD and HD (IHD) and care partners (HD-CP)
Summary
Huntington’s disease (HD) is a progressive, autosomal dominant, inherited neurodegenerative disorder affecting as many as 13.7 per 100,000 individuals based on worldwide prevalence estimates [1,2,3]. The disease is caused by an expanded CAG triplet repeat in the huntingtin gene (HTT), which in turn leads to expression of a mutated toxic huntingtin protein [4] Accumulation of this mutated protein leads to the gradual development of motor abnormalities (e.g., chorea, dystonia, dysarthria), progressive deterioration of cognitive processes (e.g., executive dysfunction, emotional regulation), and a variety of neuropsychiatric symptoms such as depression, which is considered a central component of HD [5] and affects an estimated 50% of patients [1,6]. Data for individuals with Parkinson’s Disease (IPD), the general population (GP), and respective care partners (PD-CP; GP-CP) came from the 2018 US National Health and Wellness Survey. Anxiety and depression were greater among HD vs. PD, despite similar HRQoL
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