Toward a Standardized Pediatric Approach to Sickle Cell Trait Counseling: Preliminary Findings from a Multi-Round Delphi Consensus Study
Stamatia C Vorri, Temitope O Olayinka, Kathrin Balaoura, Elizabeth McCullagh, Sana Usmani, Kenneth A RivlinAbstract
Background
Newborn screening universally identifies sickle cell trait (SCT), yet no consensus-based standard exists for how, when, or by whom SCT counseling should be delivered in pediatric care. Inconsistent counseling practices contribute to parental confusion, anxiety, missed opportunities for anticipatory guidance, and inequities in access to accurate information. Pediatric clinicians are frequently expected to provide SCT counseling despite limited training, time constraints, and unclear referral pathways. Within a large urban public health system that identifies approximately 2000 - 2300 children with SCT annually through newborn screening, optimal counseling workflows remain undefined. This study aimed to elicit frontline pediatrician perspectives on the content, timing, and workflow of SCT counseling to inform a feasible, clinician-centered implementation model within pediatric practice.
Methods
We conducted a modified Delphi study with a multidisciplinary expert panel including general pediatricians, pediatric hematologists, genetic counselors, public health professionals, and health system leaders. The study was conducted within a large urban public health system where senior pediatric leadership had endorsed SCT counseling as part of routine pediatric practice; the Delphi process was intentionally designed to elicit frontline pediatrician perspectives to inform implementation rather than impose a top-down model. While participant sex was not formally collected during the Delphi rounds, the panel was drawn from a clinician workforce that is over 80% female. Round 1 used structured surveys with 5-point Likert-scale and open-ended items to assess current practices, perceived barriers, ethical considerations, and potential models for SCT counseling. Round 2 refined key domains identified in Round 1 and assessed agreement with proposed counseling roles, workflows, content prioritization, referral criteria, training approaches, and electronic medical record (EMR) supports. Consensus was defined a priori as ≥ 70% of respondents rating an item as “agree” or “strongly agree” (4–5 on a 5-point scale). Descriptive statistics and rank-order analyses were used to summarize results. A final Round 3 is planned to ratify consensus statements and finalize recommendations.
Results
Seventeen panelists completed Round 2. Strong consensus emerged that general pediatric clinicians should serve as the primary providers of initial SCT counseling (94% agreement). Genetic counseling was viewed as important but conditional rather than routinely required, with referral favored for family planning discussions, parental request, or complex cases. Time constraints were identified as a persistent barrier. However, Round 2 demonstrated consensus that a separate dedicated SCT counseling visit (in-person or telehealth) was more feasible than embedding full counseling into routine well-child visits (77% agreement). There was strong support for a staged counseling model, with initial counseling followed by reinforcement at key developmental stages (88% agreement). Rank-order analysis of counseling content showed highest priority for clear explanation of SCT versus sickle cell disease, reassurance regarding child health, and practical preventive guidance (e.g., hydration). Reproductive implications were viewed as important but better emphasized during adolescence or young adulthood rather than as a core component of initial counseling. Panelists favored self-paced, case-based online training modules and Grand Rounds–style education for pediatric clinicians. EMR-embedded tools, particularly templated counseling notes and checklists, were rated as both feasible and impactful. Structural interventions such as streamlined genetic counseling referral pathways were rated as highly impactful but less immediately feasible.
Conclusions
Preliminary findings from this Delphi consensus study demonstrate emerging agreement on a pediatric-led, staged, and clinician-informed approach to sickle cell trait counseling. By centering frontline pediatrician perspectives within an endorsed scope of practice and a high-volume public health setting, this work provides a pragmatic foundation for developing equitable, implementable SCT counseling guidance. Final consensus recommendations will be established in Round 3.