CAREGIVER BURDEN IN HUNTINGTON'S DISEASE: IMPACT ON QUALITY OF LIFE AND WORK PRODUCTIVITY IN THE UK (HDBOI STUDY)
Author(s)
Edward J. Wild, PhD FRCP1, Idaira Rodriguez Santana, PhD2, Claudia Mighiu, MSc2, Ali Toumadj, PharmD3, Ioannis Tomazos, MBA, PhD3.
1UCL Huntington's Disease Centre, London, United Kingdom, 2Prime HCD, Knutsford, United Kingdom, 3uniQure, Inc., Lexington, MA, USA.
1UCL Huntington's Disease Centre, London, United Kingdom, 2Prime HCD, Knutsford, United Kingdom, 3uniQure, Inc., Lexington, MA, USA.
OBJECTIVES: Caregiver burden in Huntington’s disease (HD) is substantial, affecting multiple aspects of life, including daily activities, interpersonal relationships, and mental health, resulting in reduced quality of life (QoL).
The objective is to quantify the impact of HD on caregivers’ QoL and work productivity/activity impairment in the UK, using two validated instruments: the HD Quality of Life Battery for Carers (HDQoL-Cs) and the Work Productivity and Activity Impairment (WPAI).
METHODS: Demographic, HDQoL-Cs, and WPAI data for UK informal caregivers were extracted from the caregiver questionnaire of the HD Burden of Illness (HDBOI) study. The HDQoL-Cs includes 23 items across two components (“satisfaction with life” and “feelings about living with HD”), scored 0-10 (higher indicates better QoL). The WPAI captures work time missed, impaired productivity, overall work productivity impairment (WPI), and activity impairment, with scores converted to percentages (0-100;higher indicates greater impairment). Caregivers were categorized into three groups based on the disease stage of the person with HD, early (ES), mid (MS), and advanced (AS), as assessed by the treating physician. Data were analyzed descriptively.
RESULTS: A total of 70 informal caregivers completed the survey (mean age 51.9 years); 17.1% were caregivers of ES, 48.6% of MS, and 34.3% of AS participants. Most were primary caregivers (84.3%) and lived in the same household (85.7%).
HDQoL-Cs mean scores were 5.5 (SD 1.3) for “satisfaction with life” (lowest-scoring items related to life achievements, social environment, and psychological health) and 5.4 (0.7) for “feelings about living with HD” (lowest-scoring items related to stress and exhaustion).
WPAI results showed an overall activity impairment of 48% (n=70). Among employed caregivers (n=53; 75.7%), overall WPI was 60.5%. Impairment increased with disease progression.
CONCLUSIONS: These findings provide additional evidence on the societal burden of HD in the UK, highlighting a substantial caregiving burden and unmet healthcare and psychosocial support needs.
The objective is to quantify the impact of HD on caregivers’ QoL and work productivity/activity impairment in the UK, using two validated instruments: the HD Quality of Life Battery for Carers (HDQoL-Cs) and the Work Productivity and Activity Impairment (WPAI).
METHODS: Demographic, HDQoL-Cs, and WPAI data for UK informal caregivers were extracted from the caregiver questionnaire of the HD Burden of Illness (HDBOI) study. The HDQoL-Cs includes 23 items across two components (“satisfaction with life” and “feelings about living with HD”), scored 0-10 (higher indicates better QoL). The WPAI captures work time missed, impaired productivity, overall work productivity impairment (WPI), and activity impairment, with scores converted to percentages (0-100;higher indicates greater impairment). Caregivers were categorized into three groups based on the disease stage of the person with HD, early (ES), mid (MS), and advanced (AS), as assessed by the treating physician. Data were analyzed descriptively.
RESULTS: A total of 70 informal caregivers completed the survey (mean age 51.9 years); 17.1% were caregivers of ES, 48.6% of MS, and 34.3% of AS participants. Most were primary caregivers (84.3%) and lived in the same household (85.7%).
HDQoL-Cs mean scores were 5.5 (SD 1.3) for “satisfaction with life” (lowest-scoring items related to life achievements, social environment, and psychological health) and 5.4 (0.7) for “feelings about living with HD” (lowest-scoring items related to stress and exhaustion).
WPAI results showed an overall activity impairment of 48% (n=70). Among employed caregivers (n=53; 75.7%), overall WPI was 60.5%. Impairment increased with disease progression.
CONCLUSIONS: These findings provide additional evidence on the societal burden of HD in the UK, highlighting a substantial caregiving burden and unmet healthcare and psychosocial support needs.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
RWD180
Topic
Patient-Centered Research, Real World Data & Information Systems
Disease
Neurological Disorders, Rare & Orphan Diseases