Abstract Details

Title The Need for a New Tool to Assess Suicide Risk in ALS Clinical Trials

Topic Practice, Policy, and Ethics

Presentation(s) P1 - Poster Session 1 (11:45 AM-12:45 PM)

Poster/Presentation
Number 1-015

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.

Authors/Disclosures
Teresa Capella PRESENTER	Teresa Capella has nothing to disclose.
Sarah Verga (Beth Israel Deaconess Medical Center)	Miss Verga has nothing to disclose.
Courtney E. McIlduff, MD (Beth Israel Deaconess Medical Center)	The institution of Dr. McIlduff has received research support from NIH - R21NSNS118434. The institution of Dr. McIlduff has received research support from NIH - R01MH111875. The institution of Dr. McIlduff has received research support from Blavatnik Family Fund. Dr. McIlduff has received publishing royalties from a publication relating to health care.
Seward B. Rutkove, MD, FAAN	Dr. Rutkove has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Myolex, Inc. Dr. Rutkove has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for American Academy of Neuorlogy . The institution of Dr. Rutkove has received research support from NIH. The institution of Dr. Rutkove has received research support from NASA. The institution of Dr. Rutkove has received research support from Blavatnik Family Foundation. Dr. Rutkove has received intellectual property interests from a discovery or technology relating to health care. Dr. Rutkove has received intellectual property interests from a discovery or technology relating to health care. Dr. Rutkove has received publishing royalties from a publication relating to health care. Dr. Rutkove has received publishing royalties from a publication relating to health care. Dr. Rutkove has received personal compensation in the range of $500-$4,999 for serving as a Grant Reviewer with NIH.

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