Table 2.

Barriers and Facilitators of AYA-SCD Transition with Non-modifiable Factors (N) and Modifiable Factors (M)

	Healthcare Access	Healthcare Delivery and Use	Disease Education and Management	Social and Emotional Considerations
Outer Setting	• Lack of understanding from employees (N) • Lack of adult specialty services in the region (N) • The awareness of the opioid epidemic has narrowed access to pain treatment for patients with SCD (N)	• Increased awareness of the Opioid Epidemic and practice change (N) • Stigma impacts on healthcare use (N) • Needs of alternative treatment for pain (N)	• Needs of disease education for the general public, for the employees (N) • Needs of disease education for some external providers (N)	• Stigma and lack of understanding in the community (N) • Concerns about structured racism against African Americans (N)
Inner Setting	• Lack of timely care, especially in the adult ED (N) • Lack of adult specialty services in the organization (M)	• Differences between the pediatric and the adult care model (N) • Needs of a clear, structured transition program connecting different care models and provider to provider communication channels (M) • Patients need better linkage to the primary care system (M)	• Needs of clear, structured transition program to help with disease education (esp. some providers who are not familiar with SCD) and management (M) • Structured disease education for patients has been helpful (M)	• Stigma within the organization (M) • Mixed matched expectations between providers and patients, which cause communication challenges (M)
Individual Characteristics: Patients and Caregivers	• Challenges specifically to AYA-SCD: insurance status and transition (M) • Other healthcare access challenges: transportation, scheduling clinic hours (M)	• Believe that transition programs would be helpful (M) • Some patients are hesitant to transition to adult care and have low identification with the adult care institution (M)	• Some patients need better transition readiness (M) • Some caregivers recognize that they should give patients more autonomy (M)	• Challenges specifically to AYA-SCD: independent living, gaining employment, drinking, pregnancy and peer influence (N) • Some caregivers are hesitant to discuss AYA-SCD specific challenges (M) • Self-advocacy and peer-support is important (M)
Individual Characteristics: Providers		• Believe that transition programs would be helpful, but some providers are not aware of care delivery and coordination on the “other side” (M) • Desire to build better provider-patient relationships for the transition (M)	• Some ED providers may need a better understanding of SCD and treatment options (M)	• Some provider may have bias and stigma (M) • Advocacy from providers has empowered patients and caregivers across a variety of settings (M)