Table 1 Select data from seven NEON follow-up centers

Patient population

2 centers ≤ 1500 g or < 32 weeks

1 center ≤ 1500 g or ≤ 32 weeks

1 center < 1500 g

1 center < 800 g

1 center < 27 weeks, in any research study or other at team discretion

1 center – extended list of NICU graduates

Annual census ranged from 200 (private center) to 5,200 (private center with three hospital systems)

84 % was highest percentage of Medicaid NICU patients

Personnel

3 academic and 1 private center were supervised by neonatologists; 1 academic and 2 private centers were supervised by developmental pediatricians

All 7 centers had small, often part-time staff

5 centers “borrowed” staff from hospital NICU

3 academic centers used physicians-in-training

Types of non-physician professional staff involved in follow-up included: advanced nurse practitioner, nurse, social worker, physical therapist, occupational therapist, speech therapist (needed most for feeding therapy), audiologist, dietician, nutritionist, lactation consultant, psychometrician, and case manager.

Duration of follow-up

2 years up to 22 years, although the majority of centers reported following patients for 5 years or less.

Communications with families

2 centers reported providing verbal and written feedback to parents about testing at the time of the visit

4 centers reported providing feedback to the parents at the time of the visit, as well as mailing written reports to parents and primary care providers after clinic visits

1 center did not include communications in the report

Communications with providers

1 academic center and 2 private centers reported providing updates and maintaining on-going communications with their neonatology groups. The academic center and one of the two private centers reported trying to engage with community pediatricians and include them in meetings or on a committee, while the other private center reported functioning as a de facto medical home. A third private center commented, “We let the pediatricians drive.”