A survey of long-term NICU developmental follow-up practices in gastroschisis patients

Objective: To (1) elucidate current practices of NICU developmental follow-up (NDFU) programs for gastroschisis (GS) patients, (2) identify potential gaps in knowledge and care, and (3) identify future directions for research and clinical care. Study design: An online survey was distributed to academic centers caring for GS patients who also participate in the Gastroschisis Outcomes of Delivery (GOOD) Study to evaluate practices of NDFU programs. Results: There was an 89% response rate, with 18 centers participating. Sixty-one percent of NDFU programs did not routinely follow GS patients. The remaining 39% had variable guidelines for follow-up. Eligibility criteria, frequency of visits, gestational age cutoff for inclusion, and duration of follow-up were all inconsistent. Conclusion: Many NDFU programs do not routinely follow GS patients despite previous literature demonstrating they are at potentially elevated risk for worse developmental outcomes. Substantial variability in NDFU practice patterns demonstrates the need for quality long-term data.