Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Department of Preventative Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Correspondence to: Danny Bega, MD, MSCI, 710 N Lake Shore Drive, #1124, Chicago, IL 60611, USA. Tel.: +1 312 503 5706; E-mail: [email protected].
Abstract: Background:Prior Huntington’s disease (HD) studies suggest ancillary services improve motor symptoms, cognition, mood, and quality of life but frequency of use and clinicalcharacteristics 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.