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

## TL;DR

This study explores how participants from different countries want to be informed about trial results, showing that preferences vary significantly by location.

## Contribution

The study provides new insights into the heterogeneity of participant preferences for receiving trial results across diverse cultural and logistical settings.

## Key findings

- 74.6% of participants expressed interest in receiving trial results, with significant variation by country.
- Preferred methods of dissemination varied, such as community meetings in Ethiopia and individual communication in Cambodia.
- Strategies based on preferences required adaptation to local logistical challenges.

## 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.