571 Perspectives on Research Participation Feedback: Results from Burn Survivor Focus Groups

Abstract

Abstract Introduction Research participants often receive little to no feedback after participating in a research study. We sought to better understand what information burn survivors might want to receive based on their participation in research, and what formats might be most useful. Participant preferences will be used to develop summary reports based on their responses to survey questions and can inform patient information dissemination in burn clinics. Methods Adult burn survivors and caregivers/partners participated in focus groups. Multiple formats of reports on health domains, such as pain, depression and itch were discussed. All participants were asked whether they would be interested in receiving a summary of the responses they provided, even if their answers suggested problems (e.g., high depressive symptoms). Understandability of the information, preferred format (graph, table, list), and opinions about the formats were discussed. Audio recordings were transcribed, anonymized and summarized. Results: A total of 11 burn survivors and 4 caregivers/partners participated in three focus groups at different locations in the U.S. Average age of the survivors at the time of the focus groups was 49 years, 62% were male and 71% were white. Mean burn size was 50% and 75% of participants had a fire/flame etiology of injury. Burn survivors and their partners unanimously wanted to receive reports about their health after study participation, regardless of whether the feedback was positive or negative. Longitudinal graphs were too complex and tables were more understandable. The preferred format listed the health domains in which the burn survivor was doing well and the areas of concern, with optional links to more details. Burn survivors found the links to online resources helpful and suggested that information about drugs, alcohol, and PTSD be provided to all regardless of a problem in these domains. Most survivors were not concerned about the potential negative impact of reports indicating continued health problems but suggested that any negative feedback should be provided no sooner than 1-year post injury. Conclusions: Burn survivors are very interested in receiving summary reports of their responses to research surveys. Most would share the results with their caregivers and only a few would share it with care providers. Simple displays and messaging are essential for the reports to be useful. More research is needed to evaluate whether the reports can aid burn survivors in their recovery and to develop strategies for reaching out to survivors in distress. Applicability of Research to Practice Results help clinicians and researchers provide understandable health information to patients and encourage patient/family member engagement in clinical care or research.