Utilizing a Peer Patient Advocate to Develop Sickle Cell Transition Educational Materials

Background: Peer patient advocates, also called peer advocates or peer supporters have the same chronic illness as the patients that they aid to manage their health care (MacLellan, 2017). Our team developed an interactive group educational program that aimed to prepare and guide adolescents and emerging adults (AEAs) with Sickle Cell Disease (SCD) as they transition from pediatric to adult care and included a peer patient advocate as a co-facilitator of the program. Here we describe a peer advocate led process to develop an educational booklet equipped with visual aids, tables, and pertinent definitions. To our knowledge, this is a novel use of a peer patient advocate as it has not been seen in the literature before.

Methods: The first iteration of the booklet was developed by the peer patient advocate based on topics discovered as important to AEAs and parents through qualitative interviews. The intent of the booklet was to be a guide and resource to four AEA's ages 16-21 as they completed the group healthcare meetings The peer advocate drew on personal experiences with SCD to make the educational booklet as relevant as possible while integrating health information from the National Institutes of Health (National Institutes of Health, 2015), American Society of Hematology (American Society of Hematology, n.d.), and Got Transition (Got Transition, n.d.). The second iteration of the program and booklet facilitated by the peer patient advocate integrated lessons learned from the pilot and was used by twelve patients ranging in age from 14-21. Each AEA was called 1-7 days prior to the next group meeting to evaluate the educational material and share their experiences. These structured interviews took between 5-10 minutes to complete was audio-recorded and transcribed into a text file that could be used for feedback analysis.

Results: The AEAs overall described the booklet as useful, easy to understand, and beneficial to their learning. It was described as a resources that they found useful to go to for quick information and they enjoyed that it was related to the information presented within the group. The project overall demonstrated that using peer patient advocates as guides to the healthcare team can be very instrumental in developing patient educational materials and programs. Although peer patient advocates are not experts in developing educational material, this project demonstrates that peer patient advocates can develop excellent patient educational materials that are usable and relatable to adolescent patients with sickle cell disease.

Conclusions: Having a peer patient advocate as part of the team that creates the education material can increase pertinent, usable, and relatable information for AEAs with sickle cell disease. The team felt the peer advocate's contributions were vital to the booklet content. Including a peer patient advocate to develop patient education development for other chronic diseases may be valuable for AEAs with other chronic health conditions.