Ancillary Service Utilization and Impact in Huntington’s Disease

Article type: Research Article

Authors: Yomtoob, Jacob^a | Yeh, Chen^b | Bega, Danny^{c; *}

Affiliations: [a] Northwestern University Feinberg School of Medicine, Chicago, IL, USA | [b] Department of Preventative Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA | [c] Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

Correspondence: [*] Correspondence to: Danny Bega, MD, MSCI, 710 N Lake Shore Drive, #1124, Chicago, IL 60611, USA. Tel.: +1 312 503 5706; E-mail: dbega@nm.org.

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.

Keywords: Ancillary services, counseling, enroll-hd, Huntington’s disease, occupational, physical, psychotherapy, speech, swallow, therapy

DOI: 10.3233/JHD-190349

Journal: Journal of Huntington's Disease, vol. 8, no. 3, pp. 301-310, 2019