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Abstract Details

Pediatrician Involvement in Communicating Positive Newborn Screening Results for Krabbe Disease: Barriers, Facilitators, and Ideas for Interventions
Child Neurology and Developmental Neurology
P4 - Poster Session 4 (8:00 AM-9:00 AM)
8-002
In this study, we aimed to understand pediatrics clinicians' perspectives on barriers, facilitators, and ideas for interventions regarding their integration in disclosing positive NBS results for Krabbe disease. 
In 2024, the U.S. Department of Health and Human Services added infantile Krabbe disease to the Recommended Uniform Screening Panel for Newborn Screening (NBS). Families have previously expressed wanting their established general outpatient pediatrics clinicians involved in disclosure of NBS results but have also expressed dissatisfaction with the process of disclosure.
We conducted individual semi-structured interviews with clinicians in general outpatient pediatrics (including physicians and advanced practice providers) in Western Pennsylvania. Interviews were audio-recorded and transcribed. Two coders used content analysis to code transcripts and identify themes with representative quotations. Themes were mapped to levels of the Consolidated Framework for Implementation Research. 
Twenty-five clinicians participated. Barriers, facilitators, and ideas for interventions spanned the individual level, inner setting, and outer setting of the Consolidated Framework for Implementation Research. Selected barriers included: limited clinician knowledge of Krabbe disease, time in the clinical schedule, and accessibility of specialists. Selected facilitators included: prior clinical training in communicating serious diagnoses, protected time for Continuing Medical 好色先生 activities, and trustworthy online medical resources. Selected ideas for interventions included: fact sheets/scripts/algorithms for clinicians; integration of clinician education with NBS result notifications; and improvements in care coordination with specialists. 
Clinicians in primary care pediatrics identified barriers, facilitators, and ideas for interventions spanning multiple levels of the Consolidated Framework for Implementation Research. Identified targets may inform development of interventions in this area including professional training, patient education, and health systems improvements. 
Authors/Disclosures
Laura A. Kirkpatrick, MD (UPMC Children's Hospital of Pittsburgh)
PRESENTER 		The institution of Dr. Kirkpatrick has received research support from American Epilepsy Society. The institution of Dr. Kirkpatrick has received research support from Child Neurologist Career Development Program. The institution of Dr. Kirkpatrick has received research support from Child Neurology Foundation. The institution of Dr. Kirkpatrick has received research support from Rosenau Family Research Foundation. The institution of Dr. Kirkpatrick has received research support from Society of Family Planning. The institution of Dr. Kirkpatrick has received research support from Pediatric Epilepsy Research Consortium. Dr. Kirkpatrick has received personal compensation in the range of $500-$4,999 for serving as a Meeting Attendee with One8 Foundation. Dr. Kirkpatrick has received personal compensation in the range of $500-$4,999 for serving as a Meeting Attendee with Brigham and Women's Hospital. Dr. Kirkpatrick has received personal compensation in the range of $0-$499 for serving as a Meeting Attendee with Pediatric Epilepsy Research Consortium. Dr. Kirkpatrick has received personal compensation in the range of $0-$499 for serving as a Grant reviewer with Society of Family Planning. Dr. Kirkpatrick has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Norton Children's Hospital. Dr. Kirkpatrick has a non-compensated relationship as a Board of Directors member with My Epilepsy Story that is relevant to AAN interests or activities.
Erin Friel Miss Friel has nothing to disclose.
Gysella B. Muniz Pujalt, MD Dr. Muniz Pujalt has nothing to disclose.
Judy Chang, MD The institution of Dr. Chang has received research support from NIH. The institution of Dr. Chang has received research support from NIH. The institution of Dr. Chang has received research support from NIH.
Deepa S. Rajan, MD, FAAN (Childrens Hospital of Pittsburgh) Dr. Rajan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Takeda. Dr. Rajan has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Rajan has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Medlink Neurology. The institution of Dr. Rajan has received research support from National Scleroderma Foundation. The institution of Dr. Rajan has received research support from Denali Therapeutics. The institution of Dr. Rajan has received research support from Ultragenyx . The institution of Dr. Rajan has received research support from Regenxbio. The institution of Dr. Rajan has received research support from Takeda. The institution of Dr. Rajan has received research support from Prevail Therapeutics. The institution of Dr. Rajan has received research support from Children's Neuroscience Institute. Dr. Rajan has received intellectual property interests from a discovery or technology relating to health care.