How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan, and Indonesia

Authors

• Samuel Alemu Bamboro, Arba Minch University
• Fareeha Abdul Jabbar, Aga Khan UniversityFollow
• Mary Bagita- Vangana, University of Melbourne
• Nurfadhilah Hasibuan, Tridarma Healthcare Empowerment Foundation (THEMP)
• Tamiru Shibiru Degaga, Arba Minch University
• Najia Ghanchi, Aga Khan UniversityFollow
• Mohammad Asim Beg, Aga Khan UniversityFollow
• Rupam Tripura, Mahidol University
• Ayodhia Pasaribu Pitaloka, Tridarma Healthcare Empowerment Foundation (THEMP)
• Tedla Teferi Tego, Arba Minch General Hospital
• Widya Safitri, Tridarma Healthcare Empowerment Foundation (THEMP)
• Yulita ., Tridarma Healthcare Empowerment Foundation (THEMP)
• Sarah Cassidy- Seyoum, Menzies School of Health Research and Charles Darwin University
• Muthoni Mwaura, Menzies School of Health Research and Charles Darwin University
• Hellen Mnjala, Menzies School of Health Research and Charles Darwin University
• Grant Lee, Menzies School of Health Research and Charles Darwin University
• Lek Dysoley, Entomology and Malaria Control
• Lorenz von Seidlein, Mahidol University
• Ric N. Price, Liverpool School of Tropical Medicine
• Bipin Adhikari, University of Oxford
• Kamala Thriemer, Charles Darwin University

Document Type

Article

Department

Pathology and Laboratory Medicine

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-center 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 analyzed 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, favored in Ethiopia (79.0%, 264/334) and individualized 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 one-size-fits-all approach is inadequate. Strategies can be tailored to patient preference but require adaptation to accommodate logistical challenges.

Publication (Name of Journal)

Journal of Clinical and Translational Science

DOI

10.1017/cts.2025.56

Recommended Citation

Bamboro, S. A., Jabbar, F. A., Vangana, M. B., Hasibuan, N., Degaga, T. S., Ghanchi, N., Beg, M. A., Tripura, R., Pitaloka, A. P., Tego, T. T., Safitri, W., ., Y., Seyoum, S. C., Mwaura, M., Mnjala, H., Lee, G., Dysoley, L., Seidlein, L. v., Price, R. N., Adhikari, B., Thriemer, K. (2025). 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, 9(1), 1-10.
Available at: https://ecommons.aku.edu/pakistan_fhs_mc_women_childhealth_paediatr/1696