Patient and Care-Partner Voices in ALS: Shaping Behavioral Health and Collaborative Care

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neurodegenerative disease. Nearly half of people with ALS (pALS) and their care partners experience significant emotional distress, particularly around the time of diagnosis, yet behavioral health needs are inconsistently addressed.

To explore perspectives of pALS and care partners regarding emotional distress, behavioral health needs and preferences, and access to behavioral health resources within their clinics and communities.

134 participants (88 pALS and 46 care partners) were recruited through ALS Y nonprofit listservs to complete an online survey developed by the study team. The survey included closed- and open-ended questions assessing behavioral health history, current needs, access to services, and preferred care approaches.

Participants (59.7%, n = 80) self-reported lack of behavioral health screening, 47.7% (n = 42) of pALS reported new behavioral health diagnoses after ALS diagnosis. 46 (52.3%) of pALS and 32 (69.6%) of care partner proxies expressed a need for behavioral health care at time of ALS diagnosis and were open to a range of provider types. Open-ended responses noted limited time, need for ALS-tailored behavioral health care, and feeling overwhelmed postdiagnosis.

Findings highlight current gaps and opportunity to enhance behavioral health within interdisciplinary care. Embedding brief, flexible interventions delivered by a range of trained providers-particularly at key transitions-may support emotional well-being, care engagement, and quality of life for pALS and care partners.