Background Sickle cell disease (SCD) affects at least 100,000 people in the United States (US). Acute pain is the most common reason for a person with SCD to seek healthcare. Regardless of the presence of pain, persons with SCD are at risk for progressive and irreversible multiorgan dysfunction. Adults with SCD do not have reliable access to necessary specialty care and the current physician workforce is insufficient to meet this need. The National Alliance of Sickle Cell Centers (NASCC) was created to increase access to high-quality SCD comprehensive care, by setting standards of care, including recommendations for adult SCD specialist competencies. This is essential to the development of training programs to improve specialist access and to ensuring high-quality care delivery across the US.

Methods NASCC used a three-step modified Delphi consensus process that has been used in prior consensus recommendations. A panel of 17 SCD Specialists from NASCC centers led this consensus initiative to define an adult SCD specialist. The process included three cycles: 1. Panel development of pre-formative statements towards a working definition of an adult SCD Specialist (July 2023); 2. NASCC Member discussion, feedback and refinement of pre-developed statements (July 2023); and 3. A final voting survey among NASCC Center Leads (April 2025). A prespecified threshold of 70% agreement was set for consensus.

Results Overall, the response rate was 71.3% (82/115). Statements are summarized below with percent agreement in parentheses.

There was consensus on the minimum criteria for a SCD specialist (90.2%). We defined these requirements in further detail, presented according to the Accreditation Council for Graduate Medical Education competency areas of Patient Care (PC), Medical Knowledge (MK), Practice Based Learning and Improvement (PBLI), Interpersonal and Communication Skills (ICS), Professionalism (PROF), and Systems-Based Practice (SBP) below.

PC

Management of:

-Pain and individualized care plans (92.7%)

-Acute and chronic blood transfusions (95.1%)

-Disease modifying therapies (100%)

-Perioperative period (98.8%)

-SCD through pregnancy and breastfeeding (97.6%)

Diagnosis and management of:

-Acute SCD complications (97.5%)

-Chronic SCD complications (96.3%)

-Iron overload (100%)

-Transfusion reactions (91.4%)

-SCD nephropathy (90.2%)

-Hepatic complications of SCD (85.4%)

-Comorbid psychosocial impacts with SCD (85.4%)

Support reproductive health, family planning, hormone management, and gender affirming care (79%)

MK

Knowledge of:

-Stem cell-based therapies (97.6%)

-Cognitive dysfunction (95.1%)

-Immunizations (98.8%)

PBLI

Maintain scholarly activity and awareness of clinical trials and patient registries (85.4%)

ICS

Lead a multidisciplinary team (95.1%)

Engage with the community and community-based organizations (80.5%)

PROF

Apply anti-bias, anti-discrimination and cultural humility principles to practice (90.2%)

Serve as role models of advocacy (85.3%)

SBP

Recognize and address social drivers of health (96.3%)

Collaborate with pediatric providers to ensure smooth transition (98.8%)

Collaborate with primary care physicians (89%)

There was consensus that hematology board eligibility may be sufficient to be a SCD specialist (82.7%) and that physicians without hematology training can become SCD experts (89%). Building on this, there was consensus on all proposed paths to becoming an adult SCD specialist:

Hematology board eligibility with: -Dedicated training in inpatient and ambulatory SCD care at a NASCC-recognized or equivalent center (84.1%) -Dedicated clinical training, expert mentorship, and meeting specialist competencies (86.6%) Any physician with dedicated clinical training, expert mentorship, and meeting specialist competencies (85.4%) Consensus was reached on all definitions of “dedicated clinical training”:

SCD fellowship (85.2%) 1 year of mentored practice (79.3%) 3 years caring for adults with SCD and meeting the above competencies (78%)Discussion The NASCC modified Delphi consensus process was used to define an adult SCD specialist and identify potential paths towards attaining specialization. These findings provide a roadmap for educational programs to assess their curricula and for organizations to develop training programs with a consensus-based definition of a SCD specialist. They will be essential to building a high-quality workforce of adult SCD specialists.

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2025
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