Engaging Stakeholders to Characterize Perspectives and Experiences of Adolescent Sickle Cell Disease Pain and Their Related Factors

Sickle Cell Disease (SCD) is a genetic disorder often requiring intensive pain management. However, negative attitudes toward individuals with SCD and concerns about substance misuse may contribute to inadequate pain management, particularly for minoritized adolescents. In other adolescent health populations, inadequate pain management has been linked to substance use; this has not been thoroughly explored in adolescents with SCD. This study examines perspectives on SCD pain management for Black adolescents within two stakeholder groups: adolescents with SCD and healthcare providers. Participants included healthcare providers (n=48; 87.2% Female; 58.7% White; 87.2% non-Hispanic/Latinx) recruited from national medical clinics and adolescents aged 15-20 (n=138; Mage(SD)=16.76 (1.92)) from a larger study on barriers to SCD care. Healthcare providers generally reported positive views of adolescent patients with SCD, with most believing fewer than 20% exaggerated pain, abused substances, or manipulated providers. However, 83.3% were at least “somewhat” bothered by how some colleagues treated adolescents with SCD. Providers linked perceived pain exaggeration to inadequate management and prior poor care. Among adolescents, pain crisis frequency was positively associated with substance use, suggesting that unmanaged pain may increase risk for substance use. However, there were no significant differences in pain severity or interference between those who did and did not report substance use. These findings highlight a gap between providers’ self-perceived empathy and systemic biases in pain management. They also suggest that inadequate pain management may contribute to substance use risk, emphasizing the need for further research on provider attitudes and the pain-substance use relationship in this underserved population.