What does this research mean for the field?

Individuals with Amyotrophic Lateral Sclerosis (ALS) experience a wide range of signs, symptoms, and functional impacts that highlight a serious humanistic burden and high unmet needs. Novelty: ClaimNovelty.NOVEL_FINDING. Consensus alignment: ConsensusAlignment.NEUTRAL.

March 6, 2026Open Access

Exploring the Lived Experiences of Individuals with Amyotrophic Lateral Sclerosis (ALS): A Qualitative Study and Conceptual Model of Signs, Symptoms, and Functional Impacts

Key Points

The central aim is to explore the lived experiences of individuals with amyotrophic lateral sclerosis (ALS) and develop a conceptual model of their signs and symptoms.
Conducted in-depth concept elicitation interviews with individuals living with ALS.
Developed a conceptual model based on themes extracted from interviews.
Analyzed the humanistic impacts and unmet needs reported by participants.
Identified a wide range of signs and symptoms experienced by individuals with ALS.
Highlighted significant functional impacts on daily living and well-being.
Revealed a considerable unmet need for support and evaluation in clinical assessments.

Abstract

This research provides a holistic understanding of the experience of living with ALS and is the first conceptual model based on in-depth concept elicitation interviews. The findings highlight the range of signs, symptoms, and impacts that PLwALS experience, emphasizing its serious humanistic impact and high unmet need, and will help to guide patient-centric evaluation of clinical outcome assessments in future ALS studies.

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