Critical Periods of Suicide Risk in Huntington’s Disease

Department of Psychology, University of Iowa, Roy J. and Lucille A. Carver College of Medicine, 1-305 Medical Education Bldg., Iowa City, IA 52241-1000, USA.
American Journal of Psychiatry (Impact Factor: 12.3). 05/2005; 162(4):725-31. DOI: 10.1176/appi.ajp.162.4.725
Source: PubMed


Contrary to popular belief, receiving a diagnosis of a devastating fatal disease does not exacerbate, and may even alleviate, the risk of suicide. Suicidal ideation was examined in 4,171 individuals in the Huntington Study Group database. Participants were grouped according to a standardized neurological examination from 0 (i.e., normal examination) to 3 (definite Huntington's disease). Patients with an unequivocal diagnosis of Huntington's disease were further divided by stage of disease, from stage 1 (early) to stage 5 (end stage). Findings showed that the frequency of suicidal ideation doubled from 9.1% in at-risk persons with a normal neurological examination to 19.8% in at-risk persons with soft neurological signs and increased to 23.5% in persons with "possible Huntington's disease." In persons with a diagnosis of Huntington's disease, 16.7% had suicidal ideation in stage 1, and 21.6% had suicidal ideation in stage 2, whereas the proportion of Huntington's disease patients with suicidal ideation diminished thereafter. Findings suggest two critical periods for increased risk of suicide in Huntington's disease. The first critical period is immediately before receiving a formal diagnosis of Huntington's disease, and the second is in stage 2 of the disease, when independence diminishes. Although the underlying mechanisms of suicidal ideation in Huntington's disease are poorly understood, it is critical for health care providers to be aware of periods during which patients may be at an increased risk.

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Available from: Karin Hoth, Sep 23, 2014
    • "However, the majority of this study's participants did not discuss counseling. The absence of counseling from participant accounts is perhaps most poignant when considering Phyllis' experiences, which appear to reflect many features in the HD research (e.g., Paulsen et al., 2005a; Robins-Wahlin et al., 2000). "
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    ABSTRACT: Health professionals, researchers, and philosophers have debated extensively about suicide. Some believe suicides result from mental pathology, whereas others argue that individuals are capable of rational suicide. This debate is particularly poignant within illness communities, where individuals may be suffering from chronic and incurable conditions. This article engages with these issues by presenting the accounts of 20 individuals with Huntington disease (HD), a fatal degenerative condition, and 10 informal caregivers (e.g., spouses). Suicide is a leading cause of death amongst people with HD, with an incidence rate many times higher than the general population. In contrast to the majority of the academic literature on HD suicidality, study participants did not connect suicide with mental pathology. Instead, they perceived suicide as a response to the realities of living with HD, such as prolonged physiological degeneration and the need for long-term intensive health care. These findings are subsequently discussed in relation to the rational-pathological suicide binary.
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    • "Psychological symptoms also are common in persons who are presymptomatic for HD, regardless of their knowledge of gene status. A study of over 4000 persons with HD indicates that high levels of suicidal ideation are found in persons at-risk for the disease, possibly due to uncertainty about disease status and potential future decline (Paulsen et al., 2005a). Longitudinal investigation of frontal executive behaviors in HD groups suggests that apathy, disinhibition, and executive dysfunction are more prevalent in presymptomatic persons than in at-risk but gene negative persons and are associated with worsening motor and cognitive dysfunction (Duff et al., 2010). "
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    • "Although no significant difference in neuropsychological functioning was found between mutation positive and mutation negative asymptomatic carriers prior to testing [Campodonico et al., 1996], after receiving results, those who tested positive had increased risk of major depressive disorders compared to both the general population and to those who tested negative [Codori et al., 2004]. Supporting studies suggest that the incidence of suicide is highest in the prediagnostic phase, decreases for those who have recently been diagnosed, and increases again in later stages of the illness when independence diminishes [Paulsen et al., 2005; Walker, 2007]. Those who tested negative a year after receiving the test result seemed to be somewhat less distressed than they were before test disclosure, but they had not yet developed more optimistic expectations for the future [Tibben, 2007]. "
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