Burden of Aging: Health Outcomes Among Adolescents and Young Adults With Sickle Cell Disease

Although ≈95% of children with sickle cell disease (SCD) will reach adulthood in high-income settings, adolescents and young adults (AYA) face difficulties in establishing adult care and experience progression of disease severity as they age.

As patients leave pediatric care, they undergo life events as emerging adults, such as graduating high school, attending college, or joining the workforce. Along with the progression of their disease severity, these life changes introduce stressors impacting their mental health and psychosocial functioning, but are not well characterised.

We aimed to identify differences in health-related outcomes (i.e., clinical and psychosocial), and transition barriers between adolescents (age, 15–17 years) and young adults (YAs) (age, 18–25 years) to help inform the burden of aging with SCD. We hypothesised that YAs with SCD experience increased severity of health-related outcomes (i.e., increased clinical outcomes and decreased psychosocial functioning) and increased transition barriers compared with adolescents with SCD.

This analysis was conducted as part of the Sickle Cell Disease Implementation Consortium (SCDIC), a cooperative research program aimed at using implementation science research to accelerate the translation of evidence-based therapies into clinical care among individuals with SCD ages 15–45 years through research studies and a longitudinal registry.