Journal article
'I want to be generous, but I only have limited energy': a qualitative study of amyotrophic lateral sclerosis patients' preferences for clinical trials participation
Annals of medicine (Helsinki), Vol.57(1), 2586150
12/2025
DOI: 10.1080/07853890.2025.2586150
PMCID: PMC12608098
PMID: 41215674
Abstract
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.
Seventeen participants (10 ALS patients, 6 healthcare professionals, and an advocacy group representative associated with ALS) affiliated with the University of Iowa ALS Multidisciplinary clinic were purposively selected and interviewed for the study. Qualitative descriptive data were analyzed using thematic content analysis to understand the patients' experiences and preferences.
Findings indicate key emotional and logistical challenges including fatigue, travel distance and constraints, limited trial availability, which are exacerbated by the disease's rapid progression and restrictive eligibility criteria. Participants' narratives highlighted frustration, anxiety, and fear as central emotional experiences influencing their health-seeking decisions. Conversely, expressions of hope and empathy emerged as significant motivators, with patients demonstrating a willingness to participate in CTs despite the known risk of limited personal benefits, while focusing on the need to benefit future ALS research. Patients prefer and desire more compensation, broader eligibility and inclusive criteria, trial availability and publicity, and access to telemedicine.
Given the multifaceted physical, and emotional challenges faced by ALS patients, this study recommends prioritizing patient preferences in future CTs and intervention designs, while advocating for targeted grants and sustained funding that supports ALS clinical trials. This will better align with the needs and expectations of ALS patients, thereby enhancing trial participation and overall patient satisfaction.
Details
- Title: Subtitle
- 'I want to be generous, but I only have limited energy': a qualitative study of amyotrophic lateral sclerosis patients' preferences for clinical trials participation
- Creators
- Morolake J Adeagbo - University of IowaJustin Kahler - University of IowaDeShauna Jones - University of IowaHeather Schacht Reisinger - Iowa City VA Health Care SystemAndrea Swenson - University of Iowa
- Resource Type
- Journal article
- Publication Details
- Annals of medicine (Helsinki), Vol.57(1), 2586150
- DOI
- 10.1080/07853890.2025.2586150
- PMID
- 41215674
- PMCID
- PMC12608098
- NLM abbreviation
- Ann Med
- ISSN
- 1365-2060
- eISSN
- 1365-2060
- Publisher
- Taylor & Francis
- Grant note
- National Center for Advancing Translational Sciences of the National Institutes of Health: UM1TR004403
This research was supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number UM1TR004403. The content of this publication is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or University of Iowa.
- Language
- English
- Date published
- 12/2025
- Academic Unit
- Neurology; Center for Social Science Innovation; Injury Prevention Research Center; Institute for Clinical and Translational Science; Internal Medicine
- Record Identifier
- 9985026360502771
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