Toward Health Care Structure–Informed Measures of Transition Success for Young Adults With Sickle Cell Disease
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By
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Lydia H. Pecker
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Alexander K. Glaros
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Monica L. Hulbert
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July 13, 2026
Clinical Scorecard: Developing Transition Success Metrics for Young Adults with Sickle Cell Disease Based on Health Care Structure Insights
At a Glance
| Category | Detail |
|---|
| Condition | Sickle Cell Disease (SCD) |
| Key Mechanisms | Transition readiness, social support, coping strategies |
| Target Population | Young adults aged 17 to 25 years with SCD |
| Care Setting | Transition from pediatric to adult SCD care |
Key Highlights
- Over 90% of infants with SCD born after 1983 survive to adulthood.
- Transition readiness metrics are currently unsupported by evidence.
- Social support is positively associated with transition readiness.
- Disengagement from pediatric care is a significant risk for failing to transfer to adult care.
- Structural barriers, including racism, impact health outcomes for adults with SCD.
Guideline-Based Recommendations
Diagnosis
Management
Monitoring & Follow-up
Risks
- Increased risk of death as young adults age out of pediatric care.
- Disengagement from pediatric care during adolescence.
Patient & Prescribing Data
Young adults with SCD transitioning from pediatric to adult care.
Coping skills and social support are critical for successful transition.
Clinical Best Practices
- Support young adults with SCD in navigating adult care systems.
- Involve caregivers and clinic staff as critical partners in care.
- Address structural barriers to improve transition outcomes.
Related Resources & Content
