Increasing Documentation and Disclosure of Sickle Cell Trait Status: An Implementation Science Approach

Increasing Documentation and Disclosure of Sickle Cell Trait Status: An Implementation Science Approach

Increasing Documentation and Disclosure of Sickle Cell Trait Status: An Implementation Science Approach

The hemoglobinopathy newborn screen (NBS) performed on all neonates in the U.S. allows for early life-saving medical care for infants with sickle cell disease (SCD), an autosomal recessive genetic disorder. Because of its detection method, the NBS incidentally reveals hemoglobinopathy traits including sickle cell trait (SCT). In an effort to uphold the rights of the newborn to their medical data and preserve autonomy in medical decision making, pediatric and genetic society guidelines recommend disclosure and documentation of SCT results during infancy. Despite this guidance, a large guideline-to-practice gap exists: SCT status is grossly under-documented in the pediatric electronic health record and few adults report knowing their SCT status despite universal screening. We plan to evaluate the effect of a toolkit of SCT Documentation and Disclosure (SCT-DD) strategies on documentation and disclosure of SCT by pediatric primary care providers in a 2-arm randomized interrupted time series trial.

In the "add-in" arm, pediatric primary care physicians will have sequential addition of toolkit components in 3 month increments

Rate of documentation and disclosure of NBS and SCT by 2 months of age within the medical history section of the electronic health record by chart review.

Increase in the intention and confidence to document/discuss SCT result by pediatric primary care providers by survey

Proportion of children over 2 months of age who have SCT newly documented within the electronic health record via chart review

Inclusion Criteria: Outpatient pediatric primary care providers within Nemours and their patients Exclusion Criteria: none