How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan, and Indonesia
Year: 2025
Type: article
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.
DOI: 10.1017/cts.2025.56
Authors: Samuel Alemu Bamboro, Fareeha Abdul Jabbar, Mary Bagita-Vangana, Nurfadhilah Hasibuan, Tamiru Shibiru Degaga, Najia Ghanchi, Mohammad Asim Beg, Rupam Tripura, Ayodhia Pasaribu Pitaloka, Tedla Teferi Tego, Widya Safitri, Yulita, Sarah Cassidy-Seyoum, Muthoni Mwaura, Hellen Mnjala, Grant Lee, Lek Dysoley, Lorenz von Seidlein, Ric N. Price, Holger W. Unger, Bipin Adhikari, Kamala Thriemer
Institutions: Arba Minch University, Aga Khan University, The University of Melbourne, Port Moresby General Hospital, Charles Darwin University, Menzies School of Health Research, Mahidol University, University of Oxford, Mahidol Oxford Tropical Medicine Research Unit, Universitas Sumatera Utara, Maastricht University, Care and Public Health Research Institute, Cambodia National Malaria Center, National Institute of Public Health, Liverpool School of Tropical Medicine, Peter Doherty Institute, Royal Darwin Hospital
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,200
OpenAlex ID: W4408910979