PND98 HEALTH RELATED QUALITY OF LIFE AMONG PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR CARE PARTNERS IN THE US

Abstract

Huntington’s Disease (HD) is a genetic neurodegenerative disease that progressively leads to increasing disability, substantially impacting families across generations. This study describes the burden of HD on patients and care partners (CPs) and the impact of genetic testing on HD-CPs. A cross-sectional web-based survey was conducted in the US, June-August 2019. Health-related quality-of-life (HRQoL) was measured using EQ-5D (0-1; 0=worst, 1=best health imaginable) and depression severity using PHQ-9 (0-27; 0-4=none, 5-9=mild, 10-14=moderate, 15-19=moderately-severe, 20-27=severe); HD-related quality-of-life was measured for HD-patients using HD-PRO-TRIAD (1-15; higher scores indicating higher burden). Results were compared to Parkinson’s Disease (PD) patients and PD-CPs and a sample of the general population (genpop) matched on age and gender from the 2018 US National Health and Wellness Survey. Multivariate analyses were performed between HD and PD patients and CPs. 41 individuals self-reporting an HD diagnosis and 80 CPs were identified. HD-patients’ EQ-5D-score was 0.66±0.21, lower than genpop (0.81±0.17, p<0.001) but not PD-patients (0.67±0.18). HD-CPs’ EQ-5D-score was 0.82±0.15, not different from genpop-CPs (0.84±0.15) or PD-CPs (0.78±0.17). HD-patients’ PHQ-9-score was 11.59±7.20, higher than genpop (5.85±6.71, p<0.001) and PD-patients (8.21±7.20, p=0.011). HD-CPs’ PHQ-9-score was 6.84±6.38, higher than genpop-CPs (4.15±5.58, p<0.001) but not PD-CPs. HD-patients’ HD-PRO-TRIAD-score was 9.25±2.24. Eight HD-CPs underwent genetic testing; of these, 7 tested negative, 5 indicated caring for an HD-patient influenced their decision for testing, 4 reported testing impacted their emotional/social health, and 5 reported testing positively impacted their future plans/life goals. HD-CPs who underwent testing also reported closer (n=3) or stronger (n=3) relationships with the patient, feeling they will always have each other (n=5). HD-patients experience more severe depression and comparably low HRQoL to PD-patients; both patient groups experience greater burden than genpop. However, genetic testing positively impacted HD-patient-CP relationships. This highlights the importance of ensuring appropriate mental health services are available to HD patients and CPs.