The Teen Symposium: Engaging Adolescents and Young Adults with Sickle Cell Disease in Clinical Care and Research

In the US, Sickle Cell Disease (SCD) is the most prevalent genetic disorder affecting African American and Hispanic youth. Disparities in care have been reported for this population with adolescents and young adults (AYA) with SCD at increased risk for poor health outcomes. It is essential that AYA with SCD receive high quality care and have access to disease-modifying therapies, yet, engaging them in their care and clinical research studies to discover new treatments remains a challenge.

Our team developed an innovative approach to engage AYA with SCD in clinical care and research, the SCD Teen Symposium, which uses motivational interviewing strategies to educate AYA with SCD, their family members and friends while providing concurrent opportunities for research participation.

Over a six-year period, 81 AYA with SCD (47% male; M _age = 14.58; SD = 2.9) and 162 family and friends (48% male; M _age = 13.37; SD = 2.1) participated. Participants rated the Symposium as acceptable (M rating 1.74/on a scale of 1-excellent to 5-poor; SD = 0.85), and 72% would recommend it to others. Research was rated as very important by 81% of attendees (M rating 1.21/4; SD = .46) and 82% reported increased trust in research. AYA suggested improvements including separate programming for younger and older teens.

Results support the feasibility of the Teen Symposium as a model for increasing trust and potentially increasing participation in research. Future studies will determine if it can be disseminated by other SCD clinics.