Across the seven centers, there was significant variability in follow-up practices (Table 1), although not all reported on every item listed above. Age and weight criteria for NICU patients were different at all centers as was the annual census. However, a common feature among centers was that they operated with a small, part-time staff. All seven of the centers described a unique set of developmental practices, including duration of follow-up, types and timing of developmental assessments administered, education and communication with families and other health care providers, and referrals for subspecialty services. Despite the variation in assessments performed, all centers used the BSITD-III at some point. Only two of the centers administered the scales at the same age (18–24 months post-menstrual age) and one of these two centers outsourced the testing separate from the clinic visit while the other administered the scales at the time of the clinic visit. Most centers are correcting for gestational age up until age two; this process is generally well accepted [17]. Due to increased survival of the most immature and fragile infants, centers discussed whether two years of correcting for gestational age is still appropriate; however there are no data to guide a change in practice.

Table 1 Select data from seven NEON follow-up centers Full size table

General comments about the impact of follow-up were that it allows care coordination and continuity with the NICU and helps eliminate fragmentation in systems of care. Follow-up facilitates early identification of growth and feeding problems and earlier referrals to subspecialty care and rehabilitative services. Earlier referral helps to ensure children receive needed subspecialty medical care and frequent and longitudinal provision of information to families about their children’s developmental status. This aids in the prevention of developmental delay and secondary social, emotional, or behavioral problems. Ultimately, follow-up improves developmental outcomes. One optimal goal articulated was to provide follow-up through school age to assess and improve school readiness and school performance.

Needs identified by the centers focused on two main themes: resources and comprehensive multidisciplinary care. In terms of resources, centers reported needing funding to support infrastructure and research. Adequate resources would support the centers’ vision to provide comprehensive acute and well-baby care at least through transition to primary care providers. A comprehensive care follow-up program would adhere to and effectively implement established best practice guidelines (Table 2).

Table 2 Components of a quality comprehensive care NICU follow-up program Full size table

Key follow-up challenges identified

Summit participants discussed a number of systemic challenges for NICU survivors. Among these, length of stay (LOS) with urgency to discharge babies from the NICU is a major issue. Hospitals, insurers, families, and society may be unaware that an adequate support structure both during the NICU stay and during transition home is vital to ensure safe discharge.

Feeding challenges in the NICU have a major impact on LOS. NICU discharges are frequently focused on infant weight gain and achievement of full oral feedings that are not always sustained after discharge. This issue becomes a major problem for NICU survivors and their families as ability to feed the infant then becomes stressful. It is well recognized that breast milk is the best source of nutrition, providing protective immunities, growth hormones, and other elements tailored to the newborn’s needs [36, 37]. Low birth weight infants fed predominately with mothers’ own milk had better outcomes and less viral infections up to 8 months of life [38]. Exclusive breastfeeding is ideal; however, this presents many challenges for VLBW infants and their mothers [39]. NICUs need to change many practices in order to help families achieve optimal feeding goals after discharge. Many mothers forego their desire to breastfeed in order to get the baby home sooner since bottle-feeding is perceived as easier and faster [40]. Frequent post-discharge feeding issues include: mothers unable to breastfeed directly and resorting to continued pumping and feeding from bottles; babies not thriving, development of oral aversion, and feeding refusal; primary care providers changing to formulas that are inadequate for the growing premature infant or difficult to access in the outpatient setting and adding medications inconsistent with current guidelines.

All NICU survivors are at risk for neurodevelopmental deficits but, due to resource limitations, follow-up clinics are usually reserved for those who are sickest and have the most need. Some clinics are open to all who seek services but indigent populations, for a variety of reasons, often do not present to these clinics. The challenge for most developmental follow-up programs is ensuring long-term follow-up of all who are at risk, not just the sickest premature infants. Organized follow-up of all at-risk children is extremely important, as preterm children remain at risk for severe behavioral and cognitive deficits at school-age, even in the absence of early global deficits [41] and more subtle harbingers of these later deficits may present in very early life [42]. Lack of organized follow-up of all at-risk children and the resulting delay in early recognition of abnormalities may result in a missed opportunity for interventions aimed at improving modifiable outcomes. Limited budgets and resources encountered by many follow-up programs present a significant challenge to casting “a wider net” to include a representative population of premature infants at risk.

Families often face barriers to receiving follow-up services. Delays in first follow-up appointments because of staffing shortages or other systemic problems impact families’ access and use of follow-up services. When a follow-up program is funded exclusively through patient revenue, it negatively impacts follow-up rates [20]. Lack of insurance or inadequate insurance coverage and high co-pays for mental health services prevent children from receiving neurodevelopmental testing. From the parent’s perspective, one of the greatest values of developmental testing is the opportunity to learn about growth and development and tools and strategies to aid their child’s development. Parents of all socioeconomic levels are capable of learning to interact responsively with their children. Trials of parenting interventions in early childhood have demonstrated improvement in behavioral problems and responsivity [43]. Further, in a study of an intervention aimed at improving parental responsivity, VLBW children showed greater gains after the intervention than their term-born counterparts [44]. Given the tools and education, they can do the work to preserve and protect the care initiated in the NICU to help their children survive and thrive.

Follow-up programs are charged with identifying the need for therapy services among a population at high risk for delay. The tools used by most programs are not screeners; they are full assessments that identify delays warranting intervention. Screening has little purpose in an inherently high-risk population and is not effective in identifying subtle impairments [45]. Screening instruments are likely to under-identify infants in need of services, in part because they rely on parent report. Parental report may be unreliable if the questions are misunderstood or the parent has not attended to the child’s skills in all areas of development. One major challenge when referring a child to ECI is that Texas ECI programs are mandated to use only a customized version of the Battelle Developmental Inventory™ [46], and cannot accept results from any other developmental assessment. In many instances, assessments offered by follow-up programs should be accepted because these are based upon lengthy administrations of standardized clinical assessments, along with neuromotor exams provided by highly qualified professionals. This would save the ECI programs time and expense of performing a redundant service. Texas ECI is underfunded with an annual allocation of $400 per child as of February 2015. To finance operations, ECI is currently billing Medicaid and managed care organizations.