Background: The transition of adolescents and emerging adults (AEA) from pediatric to adult care is often challenging. This is especially true for those with sickle cell disease (SCD) because transition coincides with a time period of rapidly increasing mortality risk. Gaps in knowledge and lack of appropriate communication skills can contribute to this risk. Many SCD AEA do not know which variant of SCD they have, cannot explain their relevant medical history, do not understand or take ownership over requesting prescription refills, and do not have the skillset to navigate health insurance. Additionally, pain is an invisible complication that cannot be objectively measured and requires communication skills. Many patients lack the necessary communication skills to effectively articulate their pain to healthcare providers. To address the transition needs of individuals with SCD, our team adapted and developed an innovative group healthcare model based on the core components of the well-established Centering® healthcare model. We produced a group healthcare curriculum entitled Our Hands, Our Health based on these gaps in knowledge. At each session, the 8-10 patients in the group will have a one-on-one visit with their hematologist and then meet with the entire group for 60 minutes of health education through group discussions led by two facilitators using interactive activities, games, and role-plays. Patients form relationships with other members of the group and with the co-facilitators as they collaboratively discuss and generate health education strategies. Methods: Using a constant comparative technique, we reviewed the core components of the Centering® model and systematically integrated these into the Our Hands, Our Heath program. The health education content reflects the needs of all AEA as well as the unique healthcare needs of AEA with sickle cell disease as they prepare to transition to adult care. Next, we completed a 6-session feasibility and acceptability study with four participants who met monthly. Then, we expanded the program from 6 to 10 sessions and conducted a full-scale pilot meeting every other month (n=13). Direct observations of sessions, debriefings, and interviews with participants and co-facilitators were used to evaluate the model. Results: Participants and co-facilitators enthusiastically embraced the Centering-based group care model. The feasibility participants (n=4) stated that they preferred group care to individual care. From the pilot, there was only one participant who did not like meeting in a group; all others (n=9) reported that they enjoyed group meetings and preferred getting their care this way. Three participants were lost to follow-up due to moving (n=2) and full-time employment (n=1). After the 4th session, six participants reported feeling more prepared for transition. Participants described the value of shared experiences and appreciated the engaging learning environment. Participants felt group meetings offered a supportive environment allowing them to develop relationships with peers who can relate, as well as with their healthcare provider, who was a co-facilitator. They were comfortable asking questions for clarification and liked being able to have in-depth discussions. Co-facilitators reported that it was more efficient to convey health education material in groups than repeating things to each patient one by one and observed participants in group care had an increased understanding of the health education messages. Some structural changes included securing a room larger, how patients were checked in and checked out, how vital signs were taken, and the hiring of a phlebotomist. Conclusions: The Centering-based group care model was feasible and acceptable by participants and co-facilitators. In addition to patient-focused assessments, we suggest including provider satisfaction and perceived quality of care measures. Sustainability is an important consideration and a costs/benefits analysis is needed. Based on our developmental research, a Centering-based group care model appears to offer a promising strategy to increase health education and will facilitate a successful transition from pediatric to adult care. Our long-term goal is to test the efficacy of such a model. Disclosures No relevant conflicts of interest to declare.
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. Disclosures No relevant conflicts of interest to declare.
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