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, Richard; Unger, Holger; Adhikari, Bipin; Thriemer, Kamala

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

Price, Richard

Unger, Holger

Adhikari, Bipin

Thriemer, Kamala

Publication Date

2025-03-27

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.

Affiliation

College of Medicine & Health Sciences, Arba Minch University, Arba Minch, Ethiopia.

Department of Pathology and Laboratory Medicine, Aga Khan University, Karachi, Pakistan.

University of Melbourne, Faculty of Medicine, Dentistry & Health Sciences, Melbourne, Australia.

Port Moresby General Hospital, Obstetrics & Gynaecology Division, Port Mosby, Papua New Guinea.

Yayasan Penguatan Kesehatan Masyarakat Tridarma (YPKMT) / Tridarma Healthcare Empowerment Foundation (THEMP), Medan, North Sumatra, Indonesia.

College of Medicine & Health Sciences, Arba Minch University, Arba Minch, Ethiopia.

Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia.

Department of Pathology and Laboratory Medicine, Aga Khan University, Karachi, Pakistan.

Mahidol-Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand.

Centre for Tropical Medicine and Global Health, Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK.

Yayasan Penguatan Kesehatan Masyarakat Tridarma (YPKMT) / Tridarma Healthcare Empowerment Foundation (THEMP), Medan, North Sumatra, Indonesia.

Department of Pediatrics, Medical Faculty, Universitas Sumatera Utara, Medan, Indonesia.

Arba Minch General Hospital, Arba Minch, Ethiopia.

Yayasan Penguatan Kesehatan Masyarakat Tridarma (YPKMT) / Tridarma Healthcare Empowerment Foundation (THEMP), Medan, North Sumatra, Indonesia.

Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia.

Department of Health Ethics and Society, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands.

Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia.

Department of Health Ethics and Society, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands.

Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia.

National Center for Parasitology, Entomology and Malaria Control, Phnom Penh, Cambodia.

National Institute of Public Health, School of Public Health, Phnom Penh, Cambodia.

Mahidol-Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand.

Centre for Tropical Medicine and Global Health, Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK.

Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia.

Mahidol-Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand.

Centre for Tropical Medicine and Global Health, Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK.

Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia.

Department of Obstetrics and Gynaecology, Royal Darwin Hospital, Darwin, Northern Territory, Australia.

Department of Clinical Sciences, Liverpool School of Tropical Medicine, Liverpool, UK.

Department of Infectious Diseases, University of Melbourne, Doherty Institute, Melbourne, Australia.

Mahidol-Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand.

Centre for Tropical Medicine and Global Health, Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK.

Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia.

Citation

J Clin Transl Sci . 2025 Mar 27;9(1):e83. doi: 10.1017/cts.2025.56. eCollection 2025.

ISSN

2059-8661

OrcId

0000-0001-7536-7497

Pubmed ID

https://pubmed.ncbi.nlm.nih.gov/40391130/?otool=iaurydwlib

Link

https://hdl.handle.net/10137/14283

Subject

Results dissemination

clinical trial

community engagement

malaria

research participants

Title

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

Type of document

Journal Article

Entity Type

Publication

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 Price, Richard Unger, Holger Adhikari, Bipin Thriemer, Kamala
Publication Date	2025-03-27
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.
Affiliation	College of Medicine & Health Sciences, Arba Minch University, Arba Minch, Ethiopia. Department of Pathology and Laboratory Medicine, Aga Khan University, Karachi, Pakistan. University of Melbourne, Faculty of Medicine, Dentistry & Health Sciences, Melbourne, Australia. Port Moresby General Hospital, Obstetrics & Gynaecology Division, Port Mosby, Papua New Guinea. Yayasan Penguatan Kesehatan Masyarakat Tridarma (YPKMT) / Tridarma Healthcare Empowerment Foundation (THEMP), Medan, North Sumatra, Indonesia. College of Medicine & Health Sciences, Arba Minch University, Arba Minch, Ethiopia. Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia. Department of Pathology and Laboratory Medicine, Aga Khan University, Karachi, Pakistan. Department of Pathology and Laboratory Medicine, Aga Khan University, Karachi, Pakistan. Mahidol-Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand. Centre for Tropical Medicine and Global Health, Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK. Yayasan Penguatan Kesehatan Masyarakat Tridarma (YPKMT) / Tridarma Healthcare Empowerment Foundation (THEMP), Medan, North Sumatra, Indonesia. Department of Pediatrics, Medical Faculty, Universitas Sumatera Utara, Medan, Indonesia. Arba Minch General Hospital, Arba Minch, Ethiopia. Yayasan Penguatan Kesehatan Masyarakat Tridarma (YPKMT) / Tridarma Healthcare Empowerment Foundation (THEMP), Medan, North Sumatra, Indonesia. Yayasan Penguatan Kesehatan Masyarakat Tridarma (YPKMT) / Tridarma Healthcare Empowerment Foundation (THEMP), Medan, North Sumatra, Indonesia. Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia. Department of Health Ethics and Society, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands. Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia. Department of Health Ethics and Society, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, The Netherlands. Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia. Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia. National Center for Parasitology, Entomology and Malaria Control, Phnom Penh, Cambodia. National Institute of Public Health, School of Public Health, Phnom Penh, Cambodia. Mahidol-Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand. Centre for Tropical Medicine and Global Health, Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK. Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia. Mahidol-Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand. Centre for Tropical Medicine and Global Health, Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK. Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia. Department of Obstetrics and Gynaecology, Royal Darwin Hospital, Darwin, Northern Territory, Australia. Department of Clinical Sciences, Liverpool School of Tropical Medicine, Liverpool, UK. Department of Infectious Diseases, University of Melbourne, Doherty Institute, Melbourne, Australia. Mahidol-Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand. Centre for Tropical Medicine and Global Health, Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK. Global and Tropical Health Division, Menzies School of Health Research and Charles Darwin University, Darwin, Australia.
Citation	J Clin Transl Sci . 2025 Mar 27;9(1):e83. doi: 10.1017/cts.2025.56. eCollection 2025.
ISSN	2059-8661
OrcId	0000-0001-7536-7497
Pubmed ID	https://pubmed.ncbi.nlm.nih.gov/40391130/?otool=iaurydwlib
Link	https://hdl.handle.net/10137/14283
Subject	Results dissemination clinical trial community engagement malaria research participants
Title	How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan, and Indonesia.
Type of document	Journal Article
Entity Type	Publication

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

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