Objective:
In the United States, 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.
Method:
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.
Results:
Over a 6-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, SD = 0.85) on a scale from 1 (excellent) to 5 (poor), and 72% reported they would recommend it to others. Research was rated as very important (M
rating = 1.21, SD = 0.46) by 81% of attendees on a scale from 1 (very important) to 4 (not important), and 82% reported increased trust in research. AYA suggested improvements including separate programming for younger and older teens.
Conclusions:
Results support the feasibility of the Teen Symposium as a model for increasing trust and potentially increasing participation in research. Future studies will determine whether it can be disseminated by other SCD clinics.
Implications for Impact Statement
This study describes a 1-day research and education event for adolescents and young adults with sickle cell disease, the Teen Symposium. After attending the symposium, teens reported more trust in research and that they would participate in research studies in the future.
