Predictors of nursing home placement in Huntington disease V.L. Wheelock, MD; T. Tempkin, RN, MS, ANP; K. Marder, MD, MPH; M. Nance, MD; R.H. Myers, PhD; H. Zhao, ScD; E. Kayson, RN; C. Orme; I. Shoulson, MD; and the Huntington Study Group* Abstract—Objective: To determine whether motor, behavioral, or psychiatric symptoms in Huntington disease (HD) predict skilled nursing facility (SNF) placement. Methods: Subjects were participants in the Huntington Study Group’s Unified Huntington Disease Rating Scale Database (Rochester, NY) between January 1994 and September 1999. Specific motor, psychiatric, and behavioral variables in subjects residing at home and in SNF were analyzed using  2 and Student’s t-tests. For a subset of subjects for whom longitudinal data existed, a Cox proportional hazards model control- ling for age, sex, and disease duration was used. Results: Among 4,809 subjects enrolled, 3,070 had clinically definite HD. Of these, 228 (7.4%) resided in SNF. The SNF residents’ average age was 52 years, average disease duration was 8.6 years, and they were predominantly women (63%). The SNF residents had worse motor function (chorea, bradykinesia, gait abnormality, and imbalance, p  0.0001); were more likely to have obsessions, compulsions, delusions, and auditory hallucinations; and had more aggressive, disruptive (p  0.0001), and irritable behaviors (p  0.0012). For 1,559 subjects, longitudinal data existed (average length of follow-up, 1.9 years), and 87 (5%) moved from home to SNF. In the Cox model, bradykinesia (HR 1.965, 95% CI 1.083 to 3.564), impaired gait (HR 3.004, 95% CI 1.353 to 6.668), and impaired tandem walking (HR 2.546, 95% CI 1.460 to 4.439) were predictive of SNF placement. Conclusions: Institutionalized patients with HD are more motorically, psychiatrically, and behaviorally impaired than their counterparts living at home. However, motor variables alone predicted institutionalization. Treatment strategies that delay the progression of motor dysfunction in HD may postpone the need for institutionalization. NEUROLOGY 2003;60:998 –1001 Huntington disease (HD) is a progressive, autosomal dominant neurodegenerative disease. Dementia, psy- chiatric symptoms, chorea, and impairment of volun- tary movement together result in progressive loss of independence. Unlike the elderly demented popula- tion residing in skilled nursing facilities (SNF), peo- ple with HD are younger and have unique care needs. A 1996 retrospective study described the fea- tures of 97 people with HD who resided in an HD specialty unit at a SNF (n  83) or in other SNF (n  14) in Minneapolis–St. Paul between 1976 and 1993. 1 These residents were typically single, age 45, of either sex, and high school graduates. One third had serious behavioral problems, most were treated with psychotropic drugs, and 84% were still ambula- tory upon admission. Little additional information exists about the mo- tor and psychiatric characteristics of people with HD who reside in SNF. Because institutionalization is a highly significant event in the course of HD, identifi- cation of the predictors of nursing home placement may engender interventions that postpone this out- come. Furthermore, characterization of HD-specific characteristics in SNF residents should optimize their care. We sought to determine specific motor, psychiatric, and behavioral characteristics in a large cohort of people with HD who reside in nursing homes, and to determine which characteristics pre- dict institutionalization. We examined motor dys- function, psychiatric symptoms, and the presence of aggressive and disruptive behavior or irritability as possible determinants of SNF placement. Methods. Subjects. Subjects included those found in the Hun- tington Study Group’s (HSG) Unified Huntington Disease Rating Scale (UHDRS) database (Rochester, NY). 2 Data were obtained from 43 HSG member sites in North America, Europe, and Aus- tralia. Subjects had clinically definite HD. Some subjects had ge- netic confirmation by CAG expansion, but this was not required. For a subset of subjects follow-up assessments were made about every 6 months. Assessment. All subjects were assessed using the UHDRS. The UHDRS consists of five sections. Demographic data are ob- tained at the baseline visit; motor, cognitive, behavioral, and func- Additional material related to this article can be found on the Neurology Web site. Go to www.neurology.org and scroll down the Table of Con- tents for the March 25 issue to find the title link for this article. *See the Appendix on page 1000 for a complete list of the members of the Huntington Study Group. From the University of California Davis (Dr. Wheelock and T. Tempkin), Sacramento; Sergievsky Center and Taub Institute for Research on Alzheimer’s Disease and the Aging Brain (Dr. Marder), Columbia University, New York, NY; Hennepin County Medical Center (Dr. Nance), St. Louis Park, MN; Boston University (Dr. Myers), MA; and University of Rochester (Drs. Zhao and Shoulson, and E. Kayson and C. Orme), NY. Supported by the Huntington Study Group, the Huntington Disease Society of America (New York, NY), the Huntington Society of Canada, the Hereditary Disease Foundation (Santa Monica, CA), and the Joseph P. Roberson Foundation (Davis, CA). Received November 19, 2001. Accepted in final form November 29, 2002. Address correspondence and reprint requests to Dr. Vicki L. Wheelock, University of California Davis Medical Center, 4860 Y Street, Suite 3700, Sacramento, CA 95817; e-mail: Vicki.Wheelock@ucdmc.ucdavis.edu 998 Copyright © 2003 by AAN Enterprises, Inc.