Table 3 NEON recommendations for achieving quality comprehensive follow-up care

Systems

• Develop guidelines to determine levels of post-NICU discharge care based upon current knowledge and to update levels as data is acquired.

• Start a database with meaningful, de-identified data that can be shared.

• Choose common data points to gather from all units and build incrementally.

• Educate hospitals, insurers, and society that time in the NICU is treatment as maturity is important for survival.

• Work toward establishing universal nutrition guidelines for NICU and beyond.

• Build consensus that breast milk is best.

• Develop more family friendly NICUs.

• Gather data to support that formula-fed premature infants need post-discharge preterm formula for the length of time determined by the medical specialist following the child.

• Engage state and national professional organizations to promote support for quality comprehensive follow-up care, including advocacy to ensure ECI has adequate resources to provide timely and appropriate early intervention services.

• Advocate at the state level for ECI acceptance of a referral for services based upon a comprehensive developmental evaluation by an appropriate professional.

• Educate policy makers and insurers to change the culture away from waiting for a problem to occur to a prevention orientation, especially in vulnerable populations.

• Educate WIC on post-menstrual age versus chronological age and dietary issues.

Families

• Provide support to families by focusing on children’s progress and what families are doing well, rather than just their deficits.

• Empower parents.

• Give educational information in multiple modalities addressing the needs of the adult learner (e.g. web-based resources, handouts, information videos, “just-in-time” educational or interactive tools). Information should be varied and repetitive to enhance learning and overall impact.

• Help parents learn how to engage with health care professionals.

• Provide education that time in the NICU is a treatment and impacts brain development.

• Facilitate appropriate discharge with training and preparation for parents.

• Provide education to families on how to breastfeed and use a breast pump and ensure the best kind of pump is immediately available.

• For formula-fed infants, ensure families know how to mix formula correctly.

• Arrange initial follow-up visits (and link with ECI) before NICU discharge.

• Continue Post-discharge support with outpatient care, home visits, and phone calls.

• Set up Life Line for families to call for guidance and assistance finding resources and family support groups such as Hand to Hold.

• Create a Text for Baby for preterm babies modeled on the program for term babies.

• Keep in mind what matters to families, e.g. will my child go to kindergarten with the rest of the children?

• Teach parents about the role of early intervention to decrease the stigma.

Providers

• Educate neonatologists about why follow-up is part of the NICU continuum of care.

• Educate community pediatricians that follow-up supports, not supplants, their work.

• Educate community pediatricians caring for NICU survivors about existing guidelines.

• Educate providers to help ensure they are helping families use evidence-based, developmentally appropriate feeding practices.