OBJECTIVES

Huntington’s Disease (HD) is a rare, neuro-degenerative disorder with patients experiencing long term disability due to their condition. HD patients universally require caregiver support during their lifetime which is often associated with a large caregiver burden. This research explores the burden associated to caregiving by means of a set of questions, including the Work Productivity and Activity Impairment (WPAI) tool, and descriptively explores differences by disease stage.

METHODS

The HDBOI is a retrospective, cross-sectional dataset that captures patient information, medical resource, quality of life and WPAI of a cohort of HD patients and caregivers in Germany, France, Italy, Spain, UK and US. The WPAI-HD-Caregiver is a 6-item instrument which measures work time missed, impaired productivity at work, and impairment in daily activities (0% -100%) experienced by the caregiver of HD patient during the previous seven days.

RESULTS

The analytic sample is comprised of 503 HD caregivers who completed the WPAI, of which 35% were caregivers of early-stage (ES), 36% of mid stage (MS) and 29% of advanced stage patients (AS). The partner/spouse was the main caregiver (48%), followed by a parent (19%).

Overall impairment in caregiver daily activities increased with disease severity: 42% in ES, 48% in MS and 52% in AS. Likewise, for caregivers who reported being employed for pay (n=333), overall impaired productivity at work increased with disease severity: 42% in ES, 52% in MS and 54% in AS. A total of 37 respondents had to stop working because of their caregiving duties and 206 reported that their duties have impacted their career. Of the 206, 59% are prevented from working more hours, 54% prevented from career progression and 19% required to choose an alternate career.

CONCLUSIONS

Results from the HDBOI study show a significant work productivity impact on caregivers of HD patients which increases as disease progresses.