14 Further, it is difficult to know how to respond to infant risk factors as they relate to less severe developmental disabilities (such as specific learning disability, developmental coordination disorder, speech and language impairment, emotional problems, and neurobehavioral issues). 13 Of note, the term primary care pediatricians (PCPs) is used throughout this paper but it also recognizes other clinicians who may care for children born preterm, including family physicians and nurse practitioners or physician assistants.Īlthough a substantial amount of literature addresses severe neurodevelopmental disabilities associated with preterm birth and its complications, such as cerebral palsy, intellectual disability (ID), visual impairment, and hearing loss, extrapolating large studies about the risk and clinical decision-making for individual patients can be challenging. Thus, primary care pediatricians care for the majority of infants, children, and youth with a history of preterm birth and almost exclusively follow the 75% of preterm infants who were born between 34 and 36 weeks’ gestation and who are at increased risk for neurodevelopmental problems compared with their term counterparts. Moderate and late preterm (32–36 weeks’ gestation) infants who are often not eligible for follow-up clinics constitute the majority of all infants born preterm. 12 Care for children and families living in rural and underserved areas may, however, be changing with the emergence of telehealth access to multidisciplinary pediatric medical subspecialists. 11 Many high-risk neonatal follow-up clinics are located in urban areas, and in 2018 more than half of the surveyed NICU programs in the United States lacked a plan for meeting the needs of families living in rural and underserved areas. As a result, the vast majority of children born preterm received management in primary care. 9, 10 Directors of 183 academic and private multidisciplinary high-risk infant follow-up clinics in the United States reported 50% to 80% attendance of infants referred to high-risk clinics however, no-show rates increased with subsequent follow-up appointments and clinics were mostly attended by children born very or extremely preterm (less than 30–32 weeks’ gestation). In the policy statement “Hospital Discharge of the High-Risk Neonate” (reaffirmed 2018), the American Academy of Pediatrics (AAP) recommends that primary care pediatricians provide longitudinal developmental monitoring of high-risk infants and consider collaborations with multidisciplinary clinics as comprehensive follow-up options for those infants identified at hospital discharge as requiring the care of multiple disciplines.
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