Suicide among patients with amyotrophic lateral sclerosis

Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden.
Brain (Impact Factor: 9.2). 08/2008; 131(Pt 10):2729-33. DOI: 10.1093/brain/awn161
Source: PubMed


Studies on the suicide risk among patients with amyotrophic lateral sclerosis (ALS) in countries without legalized euthanasia or assisted suicide are important additions to data on the wish to die of these patients. We conducted a population-based cohort study in Sweden between 1965 and 2004, which comprised of 6,642 patients with incident ALS identified from the Swedish Inpatient Register. We calculated the standardized mortality ratios (SMRs) of suicide among the patients using the suicide rates of the general Swedish population as a reference. In total, 21 patients committed suicide during follow-up, compared to the predicted 3.6 suicides. Thus, we noted an almost 6-fold increased risk for suicide among ALS patients [SMR 5.8, 95% confidence interval (CI) 3.6-8.8]. Patients who committed suicide were, on average, around 7 years younger at the time of their first period of hospitalization than patients who did not commit suicide. The highest relative risk for suicide was observed within the first year after the patient's first period of hospitalization (SMR 11.2, 95% CI 5.8-19.6). After that, the relative risks decreased with time after hospitalization (P-value for trend = 0.006), but remained elevated 3 years later. The relative risks of suicide among ALS patients did not show a clear trend over time in contrast to the decreasing trend of relative risks for suicide among patients with cancer during the same period. Patients with ALS are at excess risk of suicide in Sweden and the relative risk is higher during the earlier stage of the disease.

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    • "Hopelessness is correlated with interest in hastened death [3], [9], [10]. Among those with terminal diagnoses, people with MND report the highest levels of interest in hastened death [11] and they also have the greatest risk of suicide [12]. These effects are mitigated in people who report higher levels of spirituality and sense of meaning [13], [14]. "
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    ABSTRACT: BackgroundMotor neurone disease (MND) practice guidelines suggest developing interventions that will promote hope, meaning, and dignity to alleviate psychological distress, but very little research has been done. This study begins to address this need by exploring the use of dignity therapy with people with MND. Dignity therapy is a brief psychotherapy that promotes hope, meaning and dignity, and enhances the end of life for people with advanced cancer. The aims of this study are to assess the feasibility, acceptability, and potential effectiveness of dignity therapy for people with MND.Methods/designThis cross-sectional feasibility study used a one-group pre-test post-test design with 29 people diagnosed with MND. Study participants completed the following self-report questionnaires: Herth Hope Index, FACIT-sp, Patient Dignity Inventory, ALS Assessment Questionnaire, ALS Cognitive Behavioural Screen, and a demographic and health history questionnaire. Acceptability was measured with a 25-item feedback questionnaire. Feasibility was assessed by examining the length of time taken to complete dignity therapy and how symptoms common in MND affected the intervention. Generalised linear mixed models and reliable change scores were used to analyse the data.ResultsThere were no significant pre-test post-test changes for hopefulness, spirituality or dignity on the group level, but there were changes in hopefulness on the individual level. The results of the feedback questionnaire indicates dignity therapy is highly acceptable to people with MND, who report benefits similar to those in the international randomised controlled trial on dignity therapy, a population who primarily had end-stage cancer. Benefits include better family relationships, improved sense of self and greater acceptance. Dignity therapy with people with MND is feasible if the therapist can overcome time and communication difficulties.ConclusionsDignity therapy for people with MND is feasible and acceptable. Further research is warranted to explore its ability to diminish distress.Trial ACTRN12611000410954
    PLoS ONE 05/2014; 9(5). DOI:10.1371/journal.pone.0096888 · 3.23 Impact Factor
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    • "In our study, the age- and sex-standardized suicide rate after an ALS diagnosis was 7 times that of the general population, and, in our data, all 6 deaths due to suicide occurred during the first 6 months after an ALS diagnosis (range, 68–186 days). The risk of suicide was higher during the earlier phase of ALS, which was also the case in a study by Fang et al,12 who hypothesized that (1) patients experienced severe emotional strain while waiting for the diagnosis to be confirmed and (2) patients must be physically capable of performing suicide. Among the present 6 cases of suicide (5 men and 1 woman), mean age at death was 58.3 years (range, 51.0–63.6 years), which was lower than that among patients who died of other causes (P < 0.001). "
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    ABSTRACT: Background Few studies have assessed cause of death among patients with amyotrophic lateral sclerosis (ALS). We investigated underlying cause and place of death among patients with ALS in Taiwan during 2003–2008. Methods The data source was the Taiwan National Health Insurance database for the period 2003–2008. In total, 751 patients older than 15 years with a primary diagnosis of ALS were included and followed until 2008 in the national mortality database. Crude mortality rates (per 100 person-years) and standardized mortality ratios (SMRs) were calculated in relation to cause of death, sex, and age group (15–44, 45–64, 65+ years). Results In total, 297 (39.6%) patients died during the follow-up period, an age- and sex-standardized mortality rate 13 times (95% CI, 10.6–15.6) that of the Taiwanese general population. The leading cause of death among the patients was respiratory diseases, and the second most frequent cause was cardiovascular diseases. During the first year after an ALS diagnosis, suicide was much more frequent (SMR, 6.9; 95% CI, 1.9–17.6) than among the general population. Conclusions During 2003–2008, respiratory diseases and cardiovascular diseases were the most frequent causes of death among Taiwanese patients with ALS. In addition, our findings indicate that suicide prevention is an urgent priority during the period soon after an ALS diagnosis.
    Journal of Epidemiology 08/2013; 23(6). DOI:10.2188/jea.JE20130045 · 3.02 Impact Factor
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    • "The investigators found that suicidal ideation was more frequent in recently diagnosed ALS patients [99]. A population-based study in Sweden identified 6,642 patients with incident ALS between 1965 and 2004 using the Swedish Inpatient Register [90]. The investigators found an almost 6-fold increased risk for suicide among ALS patients (standardized mortality ratio 5.8, 95% confidence interval 3.6–8.8). "
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    ABSTRACT: Suicidal ideation and behavior have been associated with a variety of neurological illnesses. Studies are ongoing in combat veterans and other groups to examine possible mechanisms and pathways that account for such associations. This article provides a review of the literature on suicide ideation and suicidal behavior in patients with neurological illnesses including publications on veteran's health and military medicine. Studies of suicide attempts and deaths in people with neurological illnesses are also reviewed. The studies summarized in this review indicate that there are important linkages between suicidal ideation and behavior and neurological conditions, including epilepsy, multiple sclerosis, and amyotrophic lateral sclerosis. Additional studies are needed to further clarify why suicide ideation and suicidal behavior are associated with neurological diseases, in order to improve quality of life, alleviate patient distress, and prevent nonfatal and fatal suicide attempts in veteran and non-veteran populations.
    04/2013; Suppl 9(1). DOI:10.4172/2167-1044.S9-001
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