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

Area of Science:

• Neuroscience
• Psychology
• Public Health

Background:

• Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease impacting emotional well-being.
• Nearly half of people with ALS (pALS) and their care partners face significant emotional distress, especially around diagnosis.
• Behavioral health needs of pALS and care partners are inconsistently addressed within clinical settings.

Purpose of the Study:

• To investigate the perspectives of pALS and care partners on emotional distress.
• To understand their behavioral health needs, preferences, and access to resources.
• To identify barriers and facilitators for accessing behavioral health care.

Main Methods:

• An online survey was administered to 134 participants (88 pALS, 46 care partners) recruited via ALS nonprofit listservs.
• The survey included questions on behavioral health history, current needs, service access, and preferred care approaches.
• Both closed- and open-ended questions were used to gather comprehensive data.

Main Results:

• Over 59% of participants reported a lack of behavioral health screening.
• Nearly 48% of pALS received new behavioral health diagnoses post-ALS diagnosis.
• A majority of pALS (52.3%) and care partners (69.6%) expressed a need for behavioral health care at diagnosis and were open to various providers.

Conclusions:

• Significant gaps exist in addressing the behavioral health needs of pALS and care partners.
• There is an opportunity to enhance behavioral health support within interdisciplinary ALS care.
• Flexible, tailored interventions delivered by trained providers at key transitions can improve emotional well-being and quality of life.