Suicide among patients with amyotrophic lateral sclerosis
Abstract
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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Poor quality of life and psychological distress are associated with negative outcomes, including shorter survival time and increased risk of suicide, in people with motor neuron disease.
“poor quality of life and psychological distress are associated with negative outcomes, including shorter survival time and increased risk of suicide. 4-6”
From Acceptance and Commitment Therapy plus usual care for improving quality of life in people with motor neuron disease (COMMEND): a multicentre, parallel, randomised controlled trial in the UK (2024) · cites this paper as [4]
The Discussion reports elevated suicide risk among people with ALS and discusses psychological distress, but it does not establish that distress or poor quality of life predicts suicide. The Introduction describes the disease’s usual course; it does not link poor quality of life or distress to shorter survival. No page number is available in our copy. (LLM, conf=0.86)
Experimental — accuracy not yet measuredShorter survival times, poorer quality of life and increased risks of suicide and mortality have been reported in those experiencing psychological distress.
“Although shorter survival times, poorer quality of life and increased risks of suicide and mortality have been reported in those experiencing psychological distress [8–12]”
From A randomised controlled trial of acceptance and commitment therapy plus usual care compared to usual care alone for improving psychological health in people with motor neuron disease (COMMEND): study protocol. (2022) · cites this paper as [8]
The Results report that patients with ALS had about six times the suicide risk of the general population, and the Discussion links this excess risk to psychological suffering. The paper does not establish that psychological distress itself predicts suicide, nor does it report shorter survival, poorer quality of life, or increased overall mortality among distressed people. (LLM, conf=0.86)
Experimental — accuracy not yet measuredAmyotrophic lateral sclerosis has an estimated sixfold increased risk for suicide and multiple sclerosis a two-fold risk.
“amyotrophic lateral sclerosis has an estimated sixfold increased risk (Fang, Valdimarsdóttir, Fürst, Hultman, Fall, Sparén, et al., 2008) and multiple sclerosis a two-fold risk (Harris & Barraclough, 1997)”
From The interpersonal theory of suicide. (2010) · cites this paper as Fang, Valdimarsdóttir, Fürst, Hultman, Fall, Sparén, et al., 2008
People with motor neuron disease have greater risks of suicide than the general population.
“This can have a negative effect on emotional wellbeing and self-esteem, as indicated by high prevalence rates of depression and anxiety (44 and 30%, respectively (3,4)) and greater risks of suicide in pwMND than in the general population (5,6).”
From Needs and preferences for psychological interventions of people with motor neuron disease (2019) · cites this paper as [6]
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- Authors
- Fang, F., Valdimarsdóttir, U., Fürst, C. J., Hultman, C., Fall, K., Sparén, P., & Ye, W.
- Affiliations
- Karolinska Institutet (SE)
- University of Iceland (IS)
- Stockholms Sjukhem Palliative Care Unit, Stockholm
- Uppsala University (SE)
- Corresponding author
- Fang, Fang
- ORCID
- Venue
- Brain
- Publisher
- Oxford University Press (OUP)
- Published
- 2008-07-22
- Volume
- 131
- Issue
- 10
- Pages
- 2729-2733
- ISSN
- 0006-8950 (ISSN-L)
- 1460-2156
- OpenAlex
- W2105863226
- Cited by
- 100
- References
- 21
- Citations by year
- 2026: 4 · 2025: 2 · 2024: 6 · 2023: 10 · 2022: 10 · 2021: 11 · 2020: 7 · 2019: 8 · 2018: 4 · 2017: 5 · 2016: 2 · 2015: 6 · 2014: 4 · 2013: 7 · 2012: 4
- FWCI
- 3.70
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Brain (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Suicide and Self-Harm Studies
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- amyotrophic lateral sclerosis, suicide, suicide risk, standardized mortality ratio, desire for death, disease stage, end-of-life care
- MeSH terms
- Amyotrophic Lateral Sclerosis, Depression, Hospitalization, Humans, Registries, Risk, Suicide, Sweden, Prevalence, Risk Assessment
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