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-centre 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 analysed 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 favoured in Ethiopia (79.0%, 264/334) and individualised 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 onesize- fits-all approach is inadequate. Strategies can be tailored to patient preference but require adaptation to accommodate logistical challenges.