Objective:

We sought to identify an instrument that evaluates imminent suicide risk and distinguishes it from more existential, future-oriented thoughts of death related to quality of life, the suffering of patients and loved ones, and goals of care.

Background:

Amyotrophic lateral sclerosis (ALS) clinical therapeutic trials often include a measure of suicidal adverse events called the Columbia-Suicide Severity Rating Scale (C-SSRS). However, the C-SSRS was originally designed for use in adolescents with depression. Consequently, the framing of questions is inadequate for adults living with ALS, for whom thoughts about death are understandable—and even reflective of healthy coping. Therefore, there is a need to identify an alternative measure of suicide risk in ALS investigations. 

Design/Methods:

Literature searches were performed in PubMed using the terms [(Suicid*) AND (questionnaire) AND (clinical trial) AND (ALS)] and, subsequently, [(Suicid*) AND (questionnaire) AND (terminal* ill) OR (neurodegenerat*)].

Results:

The initial combination of search terms yielded 0 results. The second broader exploration retrieved 121 publications, including 54 surveys on attitudes toward assisted suicide and 28 distinct tools for caregivers (1), providers (8), and patients (19). 6/18 patient-report measures were validated for adults with terminal disorders such as advanced cancer. These assessments incorporated queries about anxiety, depression, and the desire to hasten death, but none included a suicidality safety assessment.

Conclusions:

It is important to detect emerging risk of suicide in ALS clinical therapeutic trials. This literature search revealed no questionnaire specifically designed for this purpose. The findings suggest that a new measure combining elements of the C-SRRS and terminal illness tools could more meaningfully detect immediate threats to safety in the context of a progressive, incurable disease. Such an instrument would better align with the biopsychosocial considerations of people living with ALS—and would likely find wider application to other serious neurological and medical conditions.