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

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, Price, Ric N, Unger, Holger, Adhikari, Bipin and Thriemer, Kamala (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, Vol 9, Issue 1, e83.

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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.

Item Type:	Article
Subjects:	WC Communicable Diseases > Tropical and Parasitic Diseases > WC 750 Malaria
Faculty: Department:	Clinical Sciences & International Health > Clinical Sciences Department
Digital Object Identifer (DOI):	https://doi.org/10.1017/cts.2025.56
SWORD Depositor:	JISC Pubrouter
Depositing User:	JISC Pubrouter
Date Deposited:	19 Jun 2025 13:53
Last Modified:	19 Jun 2025 13:53
URI:	https://archive.lstmed.ac.uk/id/eprint/26839

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