Ancillary referral patterns in infants after initial assessment in a cardiac developmental outcomes clinic

OBJECTIVE: Neurodevelopmental impairment is common after surgery for congenital heart disease (CHD) in infancy. While neurodevelopmental follow-up of high-risk patients has increased, the referral patterns for ancillary services following initial evaluation have not been reported. The aim of this study is to describe the rates and patterns of referral at the initial visit to our outcomes clinic of patients who underwent surgery for CHD during infancy. OUTCOMES MEASURES: The Cardiac Developmental Outcomes Program clinic at Texas Children's Hospital provides routine longitudinal follow-up with developmental pediatricians and child psychologists for children who required surgery for CHD within the first 3 months of life. Demographic, diagnostic, and clinical data, including prior receipt of intervention and referral patterns at initial presentation, were abstracted from our database. RESULTS: Between April 2013 and May 2017, 244 infants under 12 months of age presented for initial evaluation at a mean age of 7 ± 1.3 months. At presentation, 31% (76/244) were referred for either therapeutic intervention (early intervention or private therapies), ancillary medical services, or both. Referral rates for low-risk (STAT 1-3) and high-risk (STAT 4-5) infants were similar (28 vs. 33%, P = .48). Referrals were more common in: Hispanic white infants (P = .012), infants with non-cardiac congenital anomalies (P = .001), history of gastrostomy tube placement (P < .001), and infants with prior therapy (P = .043). Infants of non-English speaking parents were three times more likely to be referred (95% CI = 1.5, 6.4; P = .002). CONCLUSIONS: At the time of presentation, nearly 1 in 3 infants required referral. Referral patterns did not vary by traditional risk stratification. Sociodemographic factors and co-morbid medical conditions increased the likelihood of referral. This supports the need for routine follow-up for all post-surgical infants regardless of level of surgical complexity. Further research into the completion of referrals and long-term referral patterns is needed.