Clinical Report: Developing Transition Success Metrics for Young Adults with SCD

Background

The survival rates for infants with SCD have significantly improved, yet young adults transitioning to adult care face increased risks of care disconnection and mortality. Understanding these dynamics is crucial for improving care outcomes for this vulnerable population.

Data Highlights

No numerical data or trial data presented in the source material.

Key Findings

• Over 90% of infants with SCD born after 1983 survive to adulthood.
• Young adults with SCD are at increased risk of death as they age out of pediatric care.
• The COMETS trial found that community health worker support and a self-management app improved health-related quality of life (HRQOL).
• Transition readiness metrics are not yet proven to predict meaningful adult outcomes.
• Social support is positively associated with transition readiness among young adults with SCD.
• Structural barriers to care may play a more significant role in transition success than individual readiness.

Clinical Implications

Clinicians should consider the role of social support and structural factors when preparing young adults with SCD for the transition to adult care. Evaluating and addressing these elements may enhance engagement and outcomes in adult health care settings.

Conclusion

The transition from pediatric to adult care for young adults with SCD requires a comprehensive understanding of both individual and systemic factors.

Related Resources & Content

1. Iyengar et al, JAMA Network Open, 2026 -- Toward Health Care Structure–Informed Measures of Transition Success for Young Adults With Sickle Cell Disease
2. Journal of Crohn's and Colitis, 2026 -- Assessing the Impact of Transitional Care on Inflammatory Bowel Disease: Creation, Validation, and Preliminary Results of a Transition Success Score
3. Pediatric Cardiology, 2025 -- Quality of Life Assessment in Young Individuals with Congenital Heart Disease: Influencing Factors and the Role of Perceived Readiness for Adulthood
4. Clinical Rheumatology, 2025 -- Outcomes of Transitioning from Pediatric to Adult Care in Patients with Juvenile Idiopathic Arthritis
5. Clinical Rheumatology — Current Landscape and Obstacles in Transitional Care for Young Individuals with Juvenile Idiopathic Arthritis within Clinical Networks
6. Toward Health Care Structure–Informed Measures of Transition Success for Young Adults With Sickle Cell Disease | Hematology | JAMA Network Open | JAMA Network
7. National Alliance of Sickle Cell Centers consensus standards for transition to adult care in sickle cell disease - ScienceDirect
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