From Amyotrophic Lateral Sclerosis to Neurodegenerative Diseases: A Scoping Review of Artificial Intelligence‐Powered Chatbots for Addressing Patients' and Caregivers' Information Needs

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that profoundly impacts patients and caregivers. Given its rapid progression and the absence of a cure, effective disease management depends on timely and reliable information. Although artificial intelligence (AI)‐powered chatbots have emerged as promising tools to support health‐related information needs, their effectiveness in addressing the specific concerns of individuals with ALS remains unclear. This scoping review aimed to identify the specific and evolving information needs of individuals with ALS and their caregivers when using chatbot technology. A systematic search was conducted across six databases—Medline (PubMed), CINAHL, Embase, PsycINFO, ACM Digital Library, and Scopus—identifying 24 studies published between 2019 and 2024. Study selection followed a dual‐reviewer approach, and methodological quality was assessed using the Mixed Methods Appraisal Tool. Data were extracted and thematically analyzed using an inductive approach. Data were extracted from all selected articles and organized thematically using an inductive approach aligned with the objectives of the scoping review. The final themes were: (1) accessibility, (2) empowerment, (3) efficiency, (4) personalization, (5) lack of empathy and nuanced understanding, (6) linguistic and technical barriers, and (7) ethical responsibility. AI‐powered chatbots offer significant potential as complementary tools to support ALS patients and caregivers. However, their design and implementation must prioritize ethical considerations, inclusivity, and user‐centered development to ensure equitable and effective support. Future research should focus on rigorous, user‐centered evaluations to optimize AI‐powered chatbot effectiveness and mitigate risks associated with misinformation, accessibility gaps, and user trust.