Objective: To identify the symptomatic domains with the greatest impact on quality-of-life for those living with Huntington’s Disease (HD) through patient and caregiver interviews.

Background: Patient-reported outcomes for HD are limited. Ideally, a disease-specific health index for HD should include the symptoms and issues that are most significant to individuals with HD.

Methods: In order to identify what issues are most important in HD, we conducted 40 qualitative interviews, 20 with patients and 20 with HD caregivers. Participants were asked to identify the issues that have the greatest impact on HD patients’ lives. Interview transcripts were analyzed using a framework technique to elucidate key themes. The number of times that HD participants and their caregivers identified specific symptoms was tabulated for further analysis.

Results: Interviewees provided 2082 quotes regarding the most impactful issues for individuals with HD. These quotes were categorized into 310 individual symptoms representing 17 themes and 3 domains (physical, mental, and social). Emotional distress (N=523), followed by cognitive impairment (304) and social role limitation (267) were the themes with the most quotes by both patients and caregivers combined. Caregivers mentioned mental health symptoms more than patients (577 vs. 265), and four themes had more than twice as many quotes from caregivers as from patients: emotional distress; cognitive impairment; social role dissatisfaction; and specific activity impairment (e.g., inability to drive, use keys, prepare food). Depression was the individual symptom mentioned most frequently by patients (22) while patient anger (30) was most frequently mentioned by caregivers. 75% of patients interviewed reported symptoms of depression, compared to 30% reporting symptoms of chorea.

Conclusions: HD is a disease of mind and body, and decline in emotional well-being is common and life-altering in those with the disease. Indeed, mental health symptoms appear to have significant impact on patients’ lives, with emotional and cognitive impairment garnering more quotes than both physical and social health symptoms. In general, both patients and caregivers are able to provide unique insight into the issues that have the greatest impact on HD patients’ lives.

An earlier version of this abstract was presented at the Huntington Study Group annual meeting, November 2-5, 2016, and is currently pending publication.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-huntingtons-disease-health-index-study-hd-hi/