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OBJECTIVE: Using a statewide population-based data source, we describe current neonatal follow-up referral practices for high-risk infants with developmental delays throughout California. METHODS: From a cohort analysis of quality improvement data from 66 neonatal follow-up programs in the California Children’s Services and California Perinatal Quality Care Collaborative High-Risk Infant Follow-Up Quality of Care Initiative, 5129 high-risk infants were evaluated at the first visit between 4 and 8 months of age in neonatal follow-up. A total of 1737 high-risk infants were evaluated at the second visit between 12 and 16 months of age. We calculated referral rates in relation to developmental status (high versus low concern) based on standardized developmental testing or screening. RESULTS: Among infants with low concerns (standard score >70 or passed screen) at the first visit, 6% were referred to early intervention; among infants with high concerns, 28% of infants were referred to early intervention. Even after including referrals to other (private) therapies, 34% infants with high concerns did not receive any referrals. These rates were similar for the second visit. CONCLUSIONS: In spite of the specialization of neonatal follow-up programs to identify high-risk infants with developmental delays, a large proportion of potentially eligible infants were not referred to early intervention.

Pediatric intensive care unit medical directors sometimes express contradictory opinions about the merits of shared benchmarking efforts and express concerns across a range of logistic, methodological, and policy issues. These findings raise fundamental questions about how to create clinical performance standards that facilitate quality improvement in the face of a seriously divided constituency. Further, we propose that pediatric intensive care unit medical directors play more active roles in the development, implementation, and communication of shared state-wide data collection.

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