Consensus and Standards to Improve Continuity of Care in Sickle Cell Disease

Although treatment options for sickle cell disease (SCD) have advanced considerably, the transition from pediatric to adult care remains one of the most vulnerable phases for affected individuals. Disruptions in care continuity during this period can result in avoidable health complications, increased morbidity, and even mortality among young adults. Recognizing these challenges, the National Alliance of Sickle Cell Centers (NASCC) developed the first comprehensive, consensus-based standards and recommendations to guide this pivotal transfer of care.

18- to 30-year-old patients in particular face an array of obstacles, from increased acute care use to diminished adherence to preventive therapies and neurocognitive challenges that impair self-management. The long-standing absence of standardized, SCD-focused transition protocols has contributed to highly variable care practices, often exposing patients to gaps in support during this critical developmental stage.

Figure 1. Adapted from Guarino et al. (2025): Summary of Standards and Recommendations (N=69 centers; consensus percentages indicated). N = 69 centers, Percentages indicate consensus.

The NASCC developed their standards through a structured consensus-building process that engaged multidisciplinary experts from pediatric, adult, and lifespan sickle cell programs, ensuring both scientific rigor and practical applicability. The panel agreed upon four core standards supported by 14 actionable recommendations. Two primary indicators were established to gauge transition success:

1. Completion of a minimum of two encounters with an adult sickle cell care program during the initial year post-transfer, conducted either virtually or in person; and
2. Attendance at no less than 50 percent of scheduled outpatient appointments over the subsequent five years, with the adult care program recognized as the patient’s designated medical home.

To complement the achievement of these standards, 14 operational recommendations are outlined to support safe and effective transitions. Key strategies include conducting structured joint sessions between pediatric and adult providers before the transfer, implementing a standardized care plan integrated within the EMR, and assigning transition coordinators to guide patients through the often complex shift to adult care. Emphasis was placed on minimizing the gap between the final pediatric appointment and the first adult visit, targeting an interval of less than three months.

The NASCC consensus also specifies essential clinical information that must accompany each transitioning patient to ensure seamless continuity in care. Key documentation includes prior sickle cell complications, transfusion records, individualized pain management approaches, mental health evaluations, prescribed disease-modifying therapies, immunization status, and laboratory monitoring data.

The novelty of this study is the establishment of standardized metrics for program assessment, institutional accountability, and research on interventional efficacy. This pragmatic approach also highlights the ease of integration into existing EMR systems, allowing for systematic tracking and proactive identification of patients at risk of falling through the cracks.

The NASCC recommendations emphasize the shared responsibility of both pediatric and adult healthcare teams. On one end, pediatric providers must proactively prepare patients for transfer, and on the other, adult teams must be prepared to welcome new patients to comprehensive, integrated care environments. This bidirectional collaboration is essential to narrow persistent gaps to reduce longstanding disparities in continuity of care.

Looking ahead, these consensus guidelines offer healthcare providers a clear, actionable framework to enhance care transitions for young adults with SCD during this pivotal life phase. By clarifying expectations and standardizing practices, the field is better positioned to improve long-term outcomes, inform healthcare policy, support reimbursement models, and guide future research efforts. What was once an unpredictable and fragmented transition process can now evolve into a deliberate, coordinated continuum of care that sustains patients throughout adulthood.

Reference
Guarino S, Jain A, Madisetti M, et al. National Alliance of Sickle Cell Centers Consensus Standards for Transition to Adult Care in Sickle Cell Disease. Blood Adv. Published online June 5, 2025. doi:10.1182/bloodadvances.2025015909