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

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.

Keywords: Results dissemination; clinical trial; community engagement; malaria; research participants.

Figure 1.

Map showing research sites in Cambodia, Ethiopia, Pakistan, and Indonesia. Generates using QGIS 3.32.3-Lima software and finalized in Canva Pro. Country Shapefiles were obtained from the Humanitarian Data Exchange (https://data.humdata.org/dataset/cod-ab-pak?, https://data.humdata.org/dataset/cod-ab-khm, https://data.humdata.org/dataset/cod-ab-eth, https://data.humdata.org/dataset/cod-ab-idn) and are licensed under a Creative Commons Attribution 4.0 (CC-BY 4.0) International licence. The world map shape file was obtained from Opendatasoft (https://public.opendatasoft.com/explore/dataset/world-administrative-boundaries/export/), and license under an Open Government Llicense v3.0.