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. 2022 Jan 26;12(2):161.
doi: 10.3390/brainsci12020161.

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

Alex Exuzides  1 , Joana E Matos  2 , Anisha M Patel  1 , Ashley A Martin  2 , Bryan Ricker  2 , Danny Bega  3
Affiliations

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

Alex Exuzides et al. Brain Sci. .

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.

Keywords: Huntington’s disease; Parkinson’s disease; anxiety; caregiver; depression.

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Conflict of interest statement

A.A.M., J.E.M. and B.R. are/were employees of Cerner Enviza at the time of the study, which received payment from Genentech to conduct the research. A.E. and A.M.P. are employees and stockholders of Genentech. D.B. was contracted by Genentech to consult on this research project.

Figures

Figure 1
Figure 1
Impact of HD on individuals with HD. HD, Huntington’s disease. Unadjusted data.
Figure 2
Figure 2
Impact of HD on care partners. Unadjusted data.
Figure 3
Figure 3
HRQoL outcomes of HD relative to GP. All comparisons adjusted for age and sex using propensity-score matching. Error bars indicate standard deviation. * p < 0.001. GP, general population; IHD, individuals with Huntington’s disease; CP, care partner; HRQoL, health-related quality of life.
Figure 4
Figure 4
HRQoL outcomes of HD relative to PD. IHD vs. IPD comparisons adjusted for sex using multivariable regression; HD-CP vs. PD-CP comparisons adjusted for sex and age using multivariable regression. Error bars indicate standard error of the mean. IPD, individuals with Parkinson’s Disease; IHD, individuals with Huntington’s disease; CP, care partner; HRQoL, health-related quality of life.
Figure 5
Figure 5
Comorbidities among HD relative to GP. All comparisons adjusted for age and sex using propensity-score matching. * p < 0.05. CP, care partner; GP, general population; IHD, individuals with Huntington’s disease.
Figure 6
Figure 6
Comorbidities among HD relative to PD. IHD vs. IPD comparisons adjusted for sex using multivariable regression; HD-CP vs. PD-CP comparisons adjusted for sex and age using multivariable regression. * p < 0.05. CP, care partner; IHD, individuals with Huntington’s disease; IPD, individuals with Parkinson’s disease.
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