102 - Variable Primary Care Provider Knowledge of Cystic Fibrosis Newborn Screening Algorithms

Poster Number: 102
Publication Number: 102.2984

Background: Rationale: Cystic Fibrosis (CF) newborn screening (NBS) algorithms are evolving to improve the detection of affected infants [1]. Communication of CF NBS results to primary care providers (PCPs) and families is a key part of the process to achieve the health benefits noted with early CF diagnosis [2]. PCPs have limited interactions with state NBS programs [3] and variable understanding of NBS processes [4].

Objective: The goal of this QI project is to assess PCP knowledge and awareness of 2022 updates to the Pennsylvania (PA) CF NBS algorithm and comfort discussing results with families.

Design/Methods: A needs assessment survey was sent to clinical staff at the 25 PA practices in our pediatric primary care network. Questions included: practice location, years of experience, role, awareness of changes to PA CF NBS protocol, comfort with interpreting CF NBS reports, and comfort with discussing CF NBS results with families.

Results: 21% (121/576) of clinical staff responded to the survey, with representation from each PA practice. Most respondents were physicians (n=71), but included nurse practitioners (n=12), nurses (n=35), and others(n=3). Most PCPs were unaware of the 2022 PA CF NBS algorithm update (Table 1). Regarding CF NBS interpretation, Table 1 demonstrates that 32.2% of PCPs were comfortable or very comfortable, while 44.7% were uncomfortable. 33% of PCPs searched for more information and 11% called for subspecialty input to help them understand NBS results. Table 1 also demonstrates responses related to discussion of CF NBS results with families. 39.7% of PCPs were comfortable or very comfortable and 36.4% were uncomfortable with that discussion. 19% were uncertain of next steps, and 17.4% preferred that subspecialists or the NBS program review results with families.

Conclusion(s): A needs assessment demonstrates minimal awareness by PCPs of updates to the PA CF NBS algorithm. There is variable PCP comfort with CF NBS interpretation and discussion of CF NBS results with families. Educational interventions are necessary and being developed to address this identified need.

Funding: CFF (SHENOY23QI0).

References
1. Farrell, P.M., et al., J Pediatr, 2017. 181S: p. S33-S44 e2.
2. Scotet, V., H. et al, Int J Neonatal Screen, 2020. 6(1): p. 18.
3. Sontag, M.K., et al., Int J Neonatal Screen, 2022. 8(3).
4. Hayeems, R.Z., et al., Pediatrics, 2009. 124(3): p. 950-8.