Ancillary Service Utilization and Impact in Huntington's Disease

Background: Prior Huntington's disease (HD) studies suggest ancillary services improve motor symptoms, cognition, mood, and quality of life but frequency of use and clinical-characteristics are unclear. Objective: Describe ancillary service utilization in a cohort of individuals with HD and determine which participant characteristics are associated with ancillary service utilization. Methods: Retrospective cross-sectional analysis of Enroll-HD database. Participants were grouped by therapy: physical and/or occupational (PT/OT), psychotherapy and/or counseling (PC), speech and/or swallowing (ST). We performed bivariate comparisons analysis of demographic and disease characteristics between those with/without each therapy and to analyze one-year mean change in assessment scores. Results: Of 4751 participants, 1537 (32.35%) utilized therapies (11.82% PT/OT, 5.33% PC, 3.01% ST, 1.98% all three, 10.21% two therapies). PT/OT participants had worse motor and functional scores: mean UHDRS motor score (41.17 vs. 38.05, p = 0.002), median total functional capacity score (TFC) (8.00 vs. 9.00, p < 0.001). PC participants had worse mood but better cognitive and functional scores: median depression score (7.00 vs. 2.00, p < 0.001), median MMSE (28.00 vs. 26.00, p < 0.001), median TFC (10.00 vs. 8.00, p < 0.001). ST participants had more dysarthria, and worse cognitive and functional scores: dysarthria (32.2% vs. 20.1%p < 0.001), mean correct Symbol Digit Modality Test (16.79 vs. 23.27,p < 0.001), median TFC (6.00 vs. 9.00, p < 0.001). Over one year, PC participants' depression scores improved compared to untreated (-1.24 vs. -0.11, p = 0.040). ST participants' depression scores worsened (1.14 vs. -0.23, p = 0.044). Mean change in TFC was not significant for any therapies. Conclusions: Only 32% of Enroll-HD site participants received ancillary services. Use correlated with expected clinical characteristics, though impact of use remains unclear.