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No going home for hospitalized Huntington's disease patients


  • Richard M. Dubinsky MD, MPH

    Corresponding author
    1. Department of Neurology, University of Kansas Medical Center, Kansas City, Kansas, USA
    • Department of Neurology, University of Kansas Medical Center, Mail Stop 2012, 3599 Rainbow Blvd., Kansas City, KS 66160
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Little is known as to what happens to people with Huntington's disease (HD) at the end of life. Exploratory analysis was performed for all admissions of people with HD in the Nationwide Inpatient Sample database, a 20% stratified sample of all US hospitalizations, from 1996 to 2002. Using the principal diagnosis and procedure, admission cohorts were determined. The common HD-associated reasons for admission were pneumonia (including aspiration, 22%), psychiatric (21.5%), debilitation (hypovolemia, nutritional deficiencies, and decubitus ulcers, 15.5%), trauma (5.7%), and nonpulmonary infections (urinary tract infections and sepsis, 11.%). Twenty-two percent were admitted for medical problems unrelated to HD. Emergency departments were the most frequent source of admission (60%), most had Medicare or Medicaid as the expected payer (80.6%), 54.4% of all admissions were discharged to long-term care facilities (LTCFs), and 3.7% died. The highest mortality was seen in the pneumonia (7.68%) and sepsis (7.39%) cohorts. Of the elective admissions, between 49.71% and 60.31% were discharged to LTCFs, representing new LTCF admissions. Based on this exploratory analysis, hospitalized HD patients are admitted late in the course of their illness, are severely disabled, and are commonly discharged to LTCFs. With 60.31% of the discharges representing new LTCF admissions, this finding shows that there is no going home from the hospital for people with HD. © 2005 Movement Disorder Society