Improving the Transition to Adult Care in Sickle Cell Disease

The transition from pediatric to adult treatment programs poses a challenge in the management of sickle cell disease. Developing transition programs with better knowledge of the factors that lead to transition success will be vital to improving patient outcomes.  

• Patients with sickle cell disease require lifelong treatment
• Transitioning from pediatric to adult care is a vital step in maintaining treatment
• Being treated with disease-modifying therapies in pediatric care and being located close to an adult treatment program facilitate a successful transition of care

People with sickle cell disease (SCD) require lifelong care. The life expectancy for SCD Is increasing, and almost all patients in high-resource countries live into adulthood. However, challenges emerge during the transition from pediatric care to self-reliant adult treatment. Patients aged 18-30 years consistently show high risk for early mortality, but this can be combated with improved methods of transitioning care.

When developing treatment programs specialized for SCD, it is important that clinicians identify the facilitators of successful transitions of care, as well as barriers preventing people from continuing care.

Factors Associated With Successful Transitions of Care

 In a retrospective cohort published in Pediatric Blood & Cancer, 45% of SCD patients at a large tertiary care center successfully transferred from pediatric to adult care programs. Patients treated with disease-modifying therapies, such as hydroxyurea or chronic transfusion therapy, were significantly more likely to transition to adult care providers. Additionally, patients with the HbSS genotype and those who transferred to a nearby facility were more likely to successfully transfer care.

Notably, the older the patient was at their last pediatric visit, the more likely they were to transition to adult care. Of the patients lost to follow-up, most were younger than age 15, which is long before they would be set to transition. Early and consistent treatment is vital, and when patients cease treatment at younger ages, they are less likely to learn disease management skills. Finding specialists also becomes more difficult without consistent connections to healthcare resources.

Preventing Treatment Adherence Decline in Adult Care Programs

When SCD patients transition from pediatric to adult care programs, treatment adherence can decline. Healthcare centers should develop robust patient-tracking systems, improve patient and family engagement, and develop early education programs about long-term disease management to successfully transition patients to adult care.

Source:

Sheppard, S., Hellemann, G., Lebensburger, J., & Kanter, J. (2023). Assessing barriers and facilitators to transition in sickle cell disease care prior to implementation of a formalized program. Pediatric Blood & Cancer, 70(4), e30160. https://doi.org/10.1002/pbc.30160