Factors Contributing to Institutionalization in Patients with Huntington's Disease

Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, Maryland 21205, USA.
Movement Disorders (Impact Factor: 5.68). 08/2011; 26(9):1711-6. DOI: 10.1002/mds.23716
Source: PubMed


The objective of this study was to determine which factors are predictive of institutionalization in Huntington's disease. Seven hundred and ninety-nine subjects with 4313 examinations from the Baltimore Huntington's Disease Center were included in the data set; 88 of these patients with an average follow-up time of 9.2 years went from living at home to being institutionalized while being observed in our clinic. We examined demographic, genetic, and clinical variables for a relationship with institutionalization using linear regressions, a Cox proportional hazards model, and χ2 or t tests in certain cases. In our linear models, scores on the Quantified Neurologic Examination (R2=0.203, P<.001), Huntington's disease Activities of Daily Living Scale (R2=0.259, P<.001), and Motor Impairment Score (R2=0.173, P<.001) were found to have the strongest correlation with time until institutionalization. In addition, CAG repeat length (R2=0.248, P<.001) was significantly associated with disease duration at institutionalization, when controlling for age at onset. In the Cox proportional hazards model, scores on the Activities of Daily Living Scale, Mini-Mental State Examination, Quantified Neurologic Examination, and Motor Impairment Score all significantly predicted placement in long-term care. Finally, institutionalized patients were shown to have a higher CAG number and a lower level of educational attainment than patients who avoided institutionalization for at least 15 years after disease onset. Neurologic findings, functional capacity, cognitive impairment, and CAG repeat length are all likely determinants of institutionalization. In contrast with other dementing conditions like Parkinson's and Alzheimer's, psychiatric symptoms were not shown to predict institutionalization in Huntington's disease. This may illustrate the especially debilitating nature of the movement disorder of Huntington's disease in comparison with the other dementias.

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    • "Furthermore, carers often feel overwhelmed, and as a consequence, might institutionalize the person with HD, as facilities for those with HD are perceived as providing the necessary 24 h supervision and care required (Klager et al., 2008). At times, however, individuals with HD are inappropriately placed in, for example, adult acute psychiatric wards or in non-specialized residences and homes (Bourne et al., 2006), with the contributory factors in patients often being physical rather than psychiatric in nature (Rosenblatt et al., 2011). "
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    ABSTRACT: Individuals with adult or juvenile Huntington disease can be cared for within psychiatric hospitals. In this paper, nurses' perceptions about the appropriateness of a psychiatric setting for these patients were explored. Semistructured interviews were conducted with 10 Maltese nurses involved in the care of these individuals. Their responses were analyzed using thematic analysis. Three main themes were identified from this study: (i) Huntington disease is not a mental illness; (ii) the lack of specialized staff and equipment within a psychiatric setting; and (iii) a need for alternative care options. The findings provide an insight into the perceptions of nurses, as they play a key role in the care and management of individuals with Huntington disease in a psychiatric setting. The findings demonstrated the need to provide alternative residential options in the community, and to improve the care and support provided both within psychiatric hospitals and the community through staff education and the provision of necessary facilities and equipment.
    Full-text · Article · May 2013 · Nursing and Health Sciences
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    ABSTRACT: Cognition has been well characterized in the various stages of Huntington disease (HD) as well as in the prodrome before the motor diagnosis is given. Although the clinical diagnosis of HD relies on the manifestation of motor abnormalities, the associated impairments have been growing in prominence for several reasons. First, research to understand the most debilitating aspects of HD has suggested that cognitive and behavioral changes place the greatest burden on families, are most highly associated with functional decline, and can be predictive of institutionalization. Second, cognitive impairments are evident at least 15 years prior to the time at which motor diagnosis is given. Finally, cognitive decline is associated with biological markers such as brain atrophy, circulating levels of brain-derived neurotrophic factors, and insulin-like growth factor 1. Efforts are now underway to develop valid and reliable measures of cognition in the prodrome as well as in all stages of HD so that clinical trials can be conducted using cognitive outcomes.
    Full-text · Article · Aug 2011 · Current Neurology and Neuroscience Reports
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    ABSTRACT: Background: The progressive nature of Huntington's disease (HD) means that families often struggle to cope with increasing care needs of their affected family member. As a result, individuals with HD are likely to be at risk of hospitalization and subsequent early placement into residential care facilities. Objective: To explore which factors were associated with early residential care placement in a group of hospitalized patients with HD. Methods: A retrospective, systematic medical file audit of a neurological inpatient unit was conducted. Fifty-nine patients with HD were admitted from the community between January 2008 and December 2011; of these, 31 patients were discharged home while 28 patients required discharge to a residential care facility. These two groups were compared on a range of demographic, clinical and psychosocial variables identified as precipitating the hospital admission. Group comparisons were performed using t-tests and chi-square tests with Bonferroni correction for multiple comparisons. Results: A higher proportion of men were placed in residential care than were able to return home (p = 0.045); and the group placed in residential care had longer inpatient hospital stays (p < 0.001). Groups did not differ in age, medications or disease duration. We found that psychosocial difficulties (p < 0.001) and behavioral problems (p = 0.001), but not physical, cognitive, or psychiatric factors, significantly differentiated the groups. Conclusions: Patients with HD discharged to residential care were more likely to have psychosocial and behavioral problems, and lengthy hospital stays. These findings indicate the need for community-based psychosocial and behavior management interventions aimed at preventing residential care admissions for persons with HD.
    Full-text · Article · Jan 2012 · Journal of Huntington's disease
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