How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan and Indonesia
2
Issued Date
2025-01-01
Resource Type
eISSN
20598661
Scopus ID
2-s2.0-105001251383
Journal Title
Journal of Clinical and Translational Science
Rights Holder(s)
SCOPUS
Bibliographic Citation
Journal of Clinical and Translational Science (2025)
Suggested Citation
Bamboro S.A., Jabbar F.A., Bagita-Vangana M., Hasibuan N., Degaga T.S., Ghanchi N., Beg M.A., Tripura R., Pasaribu Pitaloka A., Tego T.T., Safitri W., Yulita, Cassidy-Seyoum S., Mwaura M., Mnjala H., Lee G., Dysoley L., Von Seidlein L., Price R.N., Unger H.W., Adhikari B., Thriemer K. How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan and Indonesia. Journal of Clinical and Translational Science (2025). doi:10.1017/cts.2025.56 Retrieved from: https://repository.li.mahidol.ac.th/handle/123456789/109382
Title
How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan and Indonesia
Author's Affiliation
Mahidol Oxford Tropical Medicine Research Unit
The Peter Doherty Institute for Infection and Immunity
Arba Minch University
Port Moresby General Hospital
National Institute of Public Health Cambodia
Universitas Sumatera Utara
The Aga Khan University
Menzies School of Health Research
Faculty of Medicine, Dentistry and Health Sciences
Liverpool School of Tropical Medicine
Universiteit Maastricht
Nuffield Department of Medicine
Royal Darwin Hospital
Tridarma Healthcare Empowerment Foundation (THEMP)
Arba Minch General Hospital
National Center for Parasitology, Entomology and Malaria Control
The Peter Doherty Institute for Infection and Immunity
Arba Minch University
Port Moresby General Hospital
National Institute of Public Health Cambodia
Universitas Sumatera Utara
The Aga Khan University
Menzies School of Health Research
Faculty of Medicine, Dentistry and Health Sciences
Liverpool School of Tropical Medicine
Universiteit Maastricht
Nuffield Department of Medicine
Royal Darwin Hospital
Tridarma Healthcare Empowerment Foundation (THEMP)
Arba Minch General Hospital
National Center for Parasitology, Entomology and Malaria Control
Corresponding Author(s)
Other Contributor(s)
Abstract
Background. Researchers acknowledge the need to share study results with the patients and their communities, but this is not done consistently due to a plethora of barriers, including a paucity of data to guide best practice approaches in different populations. Methods. This study was nested within a large multi-centre randomized controlled trial of antimalaria treatment. Data on dissemination preferences were collected at the third month follow-up visit using a short questionnaire. Data were analysed using descriptive statistics and subsequently fed into an iterative process with key stakeholders, to develop suitable strategies for result dissemination. Results. A total of 960 patients were enrolled in the trial, of whom 84.0% participated in the nested survey. A total of 601 (74.6%) participants indicated interest in receiving trial results. There was significant heterogeneity by study country, with 33.3% (58/174) of patients indicating being interested in Cambodia, 100% (334/334) in Ethiopia, 97.7% (209/214) in Pakistan, but none (0/85) in Indonesia. The preferred method of dissemination varied by site, with community meetings favoured in Ethiopia (79.0%, 264/334) and individualised communication such as a letter (27.6%, 16/58) or phone calls (37.9%, 22/58) in Cambodia. Dissemination strategies were designed with key stakeholders and based on patient preferences but required adaptation to accommodate local logistical challenges. Conclusion. The varying preferences observed across different sites underscore that a onesize- fits-all approach is inadequate. Strategies can be tailored to patient preference but require adaptation to accommodate logistical challenges.