OBJECTIVE: To determine the number and services of follow-up programs for very low birth weight infants at 271 Neonatal Intensive Care Units (NICUs) participating in the Vermont-Oxford Network. METHODS: Identified program contacts were sent a questionnaire targeting referral criteria, evaluation, personnel and financial support for their programs. RESULTS: 221 NICUs identified 204 contacts for follow-up programs; 114 of these contacts responded to the questionnaire. Of 111 Programs, 106 (95%) had established clinical criteria for referral. The most frequent indicators for referral for evaluation were periventricular leukomalacia (93%); severe intraventricular hemorrhage (88%); neonatal seizures (83%); and birth weight < 1500 grams(84%). Referrals were accepted most often from neonatologists (100%), and least often from parents (48%). Infants seen in the programs most frequently underwent developmental evaluation (100%); neurologic (91%) and musculoskeletal (86%) evaluations were more often performed than hearing screens (58%) or vision screens (47%). The Bayley Scales of Infant Development was the most frequently used tool for developmental evaluation (72%), followed by the Denver II Screening Exam (33%). Most programs (63%) routinely stopped seeing infants by 36 months corrected age; 13% saw infants routinely at 6 years of age or more. The most common providers of direct services to all infants in a program were neonatologist (52%), physical therapists (40%) and occupational therapists (37%). Developmental pediatricians routinely provided services to all infants in 28% of the programs. Programs were financially supported most often by hospital based funds (58%) and least often by federal funds (9%). Some programs (43%) did participate in research. CONCLUSIONS: Neurologic sequelae of prematurity were the most frequently cited indications for referral to follow-up programs. A variety of developmental tools were used for evaluation; most infants were discharged from programs before the school age years. Developmental pediatricians did not routinely see all infants in follow-up programs. This information will be used to plan coordinated prospective multicenter follow-up of very low birth weight infants enrolled in the Vermont-Oxford Network.
