B62-03 Etap-scd: Education to Improve Transition in Adolescents and Young Adults With Pulmonary Complications of Sickle Cell Disease, Provider Considerations

Abstract Rationale Pulmonary complications are a leading cause of morbidity and mortality for people with sickle cell disease (SCD). Transition from pediatric to adult care can be a challenging time for adolescents and young adults (AYAs) with SCD. Improving knowledge has been identified as a key component to successful AYA transition. We aimed to investigate SCD provider perceptions of their AYA patients’ knowledge about pulmonary symptoms and diagnoses, and their own knowledge and counseling for pulmonary disease in their patients. Methods Pulmonary and hematology providers who care for AYA with SCD diagnosed with pulmonary conditions were recruited online from SCD provider networks (e.g. Sickle Cell Adult Provider Network, Strunk Hematology and Pulmonary Educational Collaborative). Participants completed a 24-question Likert scale survey and select-all-that-apply questions that asked provider perceptions of AYA patient knowledge and barriers to knowledge, and provider knowledge and counseling for pulmonary conditions. Descriptive statistics were used to present the data. Results Fifty participants (48 attendings, 2 advanced practice providers) were recruited: 8(16%) in adult hematology, 16(32%) in pediatric hematology, 11(22%) in adult pulmonology, 12(24%) in pediatric pulmonology, 2(4%) in adult/pediatric hematology, and 1(2%) in adult/pediatric pulmonology. Forty participants (80%) reported being in practice 5 years, 40(80%) reported caring for 20 patients with SCD, and 31(62%) reported seeing patients with sickle cell lung disease (SCLD) at least monthly. Provider perceptions of patient knowledge of SCLD are represented in figure 1. Provider reported barriers to patient knowledge included that someone talked to the patient about their lung disease, but patients didn’t understand the information, 37/50(74%), forgot the information, 33/50(66%), or weren’t paying attention, 15/50(30%), no one talked to the patient about their lung disease 20/50(40%), and they were not interested in learning the information 7/50(14%). Most providers, 28/50(56%), reported feeling comfortable counseling about SCLD, however, 34/50(68%) reported wishing they knew more about SCLD, and only 9/50(18%) reported thinking they knew how their patients best learn information. Conclusions SCD providers perceive that their AYA patients have SCLD knowledge gaps and barriers to obtaining knowledge. Almost all providers wanted their patients to know more about their lung disease. Future studies focused on how to communicate to AYA about their lung disease and develop novel strategies (e.g. technology-based interventions and digital storytelling) to improve patient knowledge about SCLD during the AYA transition, have potential to fill these perceived knowledge gaps and to improve outcomes in this particularly high-risk population. This abstract is funded by: Nationwide Children’s Hospital Intramural Grant Funding and NIH T32