Or register here
Global Search

Trusted Resources: Evidence & Education

Scientific literature and patient education texts

Back to Evidence & Education / Scientific Articles

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

key information

source: Blood

year: 2022

authors: Corinna L. Schultz, Alison Taggi Pinto, Morgan Thomas, Melanie Pitone, Michael Cellucci, Robin E Miller, Kim Smith-Whitley, Melissa A. Alderfer

summary/abstract:

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%).

organization: Sidney Kimmel Medical College of Thomas Jefferson University, USA; Nemours Children's Health, USA; Global Blood Therapeutics, USA; Children's Hospital of Philadelphia, USA

DOI: 10.1182/blood-2022-170229

read more

Related Content

To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close

© 2024 rareLife solutions Inc.

To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close