Pediatricians’ Disclosure and Documentation of Sickle Cell Trait Found on Newborn Screening: Barriers and Possible Implementation Strategies

Introduction: All states in the US require hemoglobinopathy testing as part of the newborn screen (NBS) which incidentally identifies individuals with sickle cell trait (SCT). Each state has its own protocol for disclosure of SCT results to families (i.e., via primary care provider (PCP), public health nurse, direct mailing to family) with no standards for documentation in the electronic health record (EHR). Our past work showed that SCT is documented 53% of the expected rate within our EHR. Though gaps in documentation may not equate to lack of disclosure, such gaps demonstrate a risk for inadequate counseling and loss of data with transitions of care. Further, the majority of individuals with SCT are Black or Hispanic. Failure to disclose SCT may contribute to inequities in healthcare and hamper informed reproductive decision making. Methods: A cross sectional survey of outpatient PCPs at 43 pediatric offices within a pediatric health system in Delaware, Pennsylvania, and Florida was conducted. Using Likert scales, rating scales, and free text response, the survey assessed PCP practices surrounding NBS results, attitudes toward SCT disclosure and documentation, and ranking of implementation strategies from the "Expert Recommendations for Implementing Change” project intended to increase SCT documentation and disclosure. Recruitment and survey administration was via REDCap. Lunch was provided to offices with >75% participation. Free text items were analyzed using qualitative methods. Descriptive statistics were used for other items. The study was approved by the IRB. Results: Participants: Seventy-eight PCPs from 43 practices completed surveys (51% recruitment rate). Fourteen offices received lunch incentives. PCPs worked in their offices a mean of 7.1 years (SD 6.8y). Most (76%) identified as female and White (66%), with 17% Asian, 4% Black, and 12% Hispanic. Practice locations varied in percentages of patients insured by Medicaid (3-76%) or who identify as Black (2-91%). Abstract source