Table 1.

Barriers to transition in sickle cell disease and cystic fibrosis

Youth/caregiver barriers

Depression, anxiety, other mental health disorders and behavioral abnormalities

Academic failure due to lost school days

Cognitive deficits

Perceived lack of disease knowledge by practitioners

Youth lack of understanding of current therapy and its benefits; poor adherence attachment to pediatric care team (youth and/or parent)

Psychosocial resistance (youth and/or parent)

Health system barriers

Inadequate training of primary and subspecialty care providers

Shortage of mental health practitioners and services

Lack of appropriate training on treating childhood-onset health conditions among adult-focused health care providers

Resistance of pediatric health care teams to initiate transition activities and transfer to adult systems

Challenges in care coordination across systems (lack of integration of health records)

Poor access to adequate health insurance coverage in young adulthood; high proportion of populations receiving public insurance through Medicaid