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\begin{document}

\title{New York Cystic Fibrosis Newborn Screening Consortium Quality
Improvement: Focus on Parent and Pediatrician Education and Develop a
Statewide Standard of Care for CF-Related Metabolic Syndrome infants.}



\author[1]{Saroj Choudhary}%
\author[2]{Danielle Goetz}%
\author[3]{Eleanor Muise}%
\author[3]{Soumia Hammouda}%
\author[3]{Robert Giusti}%
\affil[1]{NYU Langone Hospital - Long Island New Life Center}%
\affil[2]{University at Buffalo Department of Pediatrics}%
\affil[3]{New York University Department of Pediatrics}%


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  \date{May 23, 2024}


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\begin{abstract}
\textbf{Background:} CFTR-Related Metabolic Syndrome/ Cystic Fibrosis
Screen Positive, Inconclusive Diagnosis (CRMS/CFSPID) is the diagnosis
in infants who have a positive Cystic Fibrosis (CF) newborn screen
(NBS), 2 CF-causing mutations, and borderline or normal sweat test. NY
State implemented a new CF NBS algorithm (IRT-DNA-SEQ) in December 2017
with significant improvement in positive predictive value. This
algorithm also resulted in detection of more CRMS cases. For these
infants repeat sweat testing is recommended at 6, 12, and 18 months to
monitor for risk of rising sweat chloride over time and 6-48\% of
infants with CRMS develop clinical features suggestive of CF. Infants
with CRMS and sweat test results in the normal range are often lost to
follow and parents were unwilling to return for recommended repeat sweat
testing during the statewide lockdown during the peak of COVID-19
pandemic. We recognized the practice gap exacerbated during the pandemic
and underscore the importance of establishing a medical home in a CF
Center for longitudinal care. \textbf{Methods:} Retrospective analysis
of infants with CRMS from December 2017 to December 2020 were collected
by 10 NY CF Centers and the NBS program with NYU as the data collection
and statistical analysis site. Infants with CRMS without repeat sweat
chloride testing at 6 months of age were considered lost to follow up,
and their parents were contacted via mail or telephone. Families
completed a questionnaire that was developed with the assistance of CF
Voice to evaluate parental understanding of CRMS and the recommendation
for repeat sweat chloride testing. Primary care providers (PCPs) caring
for infants with CRMS were also contacted and provided educational
materials about CRMS. A subcommittee of CF Center Directors met to
develop a statewide approach for the management of infants with CRMS.
\textbf{Results:} Of 350 infants diagnosed with CRMS, 179 (51.1\%)
infants were lost to follow up. As an outcome of this QI effort 31
(17.3\%) were scheduled for repeat sweat tests and follow up at CF
Centers. This QI effort explored the knowledge and practice gap among
PCPs with limited understanding of the implications of a CRMS diagnosis.
CF Center Directors subcommittee issued a consensus statement regarding
evaluation and follow up for infants with CRMS in NY.
\textbf{Conclusions:} This QI effort effectively recaptured infants with
CRMS previously lost to follow up. Consensus recommendations for CRMS
include annual visits until 2-6 years of age for repeat sweat testing
and in adolescence to educate the patient about clinical and
reproductive implications of CRMS.%
\end{abstract}%



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