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)
Bamboro, Samuel Alemu
Jabbar, Fareeha Abdul
Bagita-Vangana, Mary
Hasibuan, Nurfadhilah
Degaga, Tamiru Shibiru
Ghanchi , Najia
Beg, Mohammad Asim
Tripura, Rupam
Pitaloka, Ayodhia Pasaribu
Tego, Tedla Teferi
Safitri, Widya
Yulita
Cassidy-Seyoum, Sarah
Mwaura, Muthoni
Mnjala, Hellen
Lee, Grant
Dysoley, Lek
von Seidlein, Lorenz
Adhikari, Bipin
Thriemer, Kamala
Abstract
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.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.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.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 information
J Clin Transl Sci . 2025 Mar 27;9(1):e83. doi: 10.1017/cts.2025.56. eCollection 2025.
Date Issued
2025-03-27
Type
Journal Article
Journal Title
Journal of clinical and translational science
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