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Predictors of nursing home placement in Huntington disease

*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.

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{at}ucdmc.ucdavis.edu

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 controlling 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.

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