Early neurodevelopmental follow-up in the NICHD neonatal research network: Advancing neonatal care and outcomes, opportunities for the future.

At the inception of the Eunice Kennedy Shriver National Institute of Child Health and Development Neonatal Research Network (NRN), provision of care for extremely preterm (EPT) infants was considered experimental. The NRN Follow-up Study Group, initiated in 1993, developed infrastructure with certification processes and standards, allowing the NRN to assess 2-year outcomes for EPT and to provide important metrics for randomized clinical trials. This chapter will review the NRN Follow-up Study Group's contributions to understanding factors related to improved neurodevelopmental, behavioral, and social-emotional outcomes of EPT infants. We will also discuss follow up challenges, including reassessing which outcomes are most meaningful for parents and investigators. Finally, we will explore how outcome studies have informed clinical decisions and ethical considerations, given limitations of prediction of complex later childhood outcomes from early neurodevelopmental findings.

Society for Developmental & Behavioral Pediatrics Position Statement on Telehealth.

ABSTRACT: Telehealth has long held promise as a way to increase access to subspecialty care for children and families, including in developmental and behavioral pediatrics (DBP). The coronavirus disease 2019 (COVID-19) pandemic necessitated rapid uptake of telehealth to continue care delivery that was facilitated by "temporary" policy changes related to the pandemic. As a result, the field of DBP has recognized telehealth as a potential model of care for performing home-based diagnostic assessments, providing medication management follow-up, and delivering therapeutic interventions for children with neurodevelopmental disorders. Telehealth has been helpful in mitigating barriers families often face when attending in-person visits (lack of transportation and child care, missed work hours, etc) but has also highlighted additional determinants of health that need to be addressed to provide equitable access to care (broadband connectivity, device access, digital literacy, access to interpretation and sign language services, etc). Anticipating the lifting of pandemic-related emergency declaration and expiration of temporary policies around telehealth, the ability to continue to deliver DBP care by telehealth is uncertain. The purpose of this policy statement is to advocate for legislation and policies that support ongoing, equitable, home-based telehealth care for patients seen by DBP providers while ensuring equitable access to DBP in general. In addition, there is a need to recognize the benefits and challenges of telehealth versus in-person care and to identify clinical scenarios that favor 1 model of care versus the other.