Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners–Comparing to Parkinson’s Disease and the General Population

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.

Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial

“…In the first study Exuzides et al reported data from a large cross-sectional survey in the United States [ 22 ]. The authors reported that individuals with HD had a lower quality of life and more depressive symptoms.…”

Quality of life, health-related quality of life, and associated factors in Huntington’s disease: a systematic review

“…In total, four studies compared the HRQoL of mHDGECs with that of other patient groups or controls [ 21 , 26 , 29 , 42 ]. Two studies included a comparison group of people with other neurological conditions (i.e., cerebellar ataxia, Charcot–Marie–Tooth disease, motor neuron disease, multiple system atrophy, postpolio syndrome, progressive supranuclear palsy [ 29 ] and PD [ 42 ]).…”

“…In total, four studies compared the HRQoL of mHDGECs with that of other patient groups or controls [ 21 , 26 , 29 , 42 ]. Two studies included a comparison group of people with other neurological conditions (i.e., cerebellar ataxia, Charcot–Marie–Tooth disease, motor neuron disease, multiple system atrophy, postpolio syndrome, progressive supranuclear palsy [ 29 ] and PD [ 42 ]). In the first study, conclusions were only drawn for the combined sample of neurological conditions, yet the authors stated that the subgroup of mHDGECs ( n = 53) reported significantly higher levels on the HRQoL domains of anxiety and depression compared to all other groups ( n = 213) [ 29 ].…”

“…In the first study, conclusions were only drawn for the combined sample of neurological conditions, yet the authors stated that the subgroup of mHDGECs ( n = 53) reported significantly higher levels on the HRQoL domains of anxiety and depression compared to all other groups ( n = 213) [ 29 ]. In the latter study, no significant differences were found between mHDGECs ( n = 41) and patients with PD ( n = 118) on overall HRQoL [ 42 ].…”

Neuropsychiatrische Störungen bei Chorea Huntington

“…HD-Patienten haben im Vergleich zur Allgemeinbevölkerung eine signifikant niedrigere Lebensqualität und eine signifikant höhere Rate an Angststörungen und Depressionen und Suiziden. Auch die pflegenden Angehörigen von HD-Patienten zeigten häufiger Angststörungen und Depressionen als Pflegende in der Allgemeinbevölkerung [21]. In dieser Studie waren die Häufigkeiten von komorbiden Angststörungen (HD-Patienten bzw.…”