'I want to be generous, but I only have limited energy': a qualitative study of amyotrophic lateral sclerosis patients' preferences for clinical trials participation.

ABSTRACT:

Background and objective

Research and decisions on health-related issues such as Amyotrophic Lateral Sclerosis (ALS) continue to evolve as the etiology of network degenerative disease remains indeterminate. Due to its heterogeneity, clinical trials (CTs) are continually being conducted for beneficial breakthroughs aimed at improving the lives of patients with ALS. However, there is a dearth of research on ALS patients' health-seeking decisions and preferences in CTs, particularly for patients living in rural areas. To bridge this important gap, we explored patients' subjective experiences and preferences in CT participation through their emotions.

Materials and methods

Seventeen participants (10 ALS patients, 6 healthcare professionals, and an advocacy group representative a

SUBMITTER: Adeagbo MJ 

PROVIDER: S-EPMC12608098 | biostudies-literature | 2025 Dec

REPOSITORIES: biostudies-literature