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

Abstract

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.

Implementing neurodevelopmental follow‐up care for children with congenital heart disease: A scoping review with evidence mapping

“…Full‐text screening of these 193 publications resulted in 35 publications being included in this review. 9 , 13 , 14 , 15 , 16 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 The stages of the search and screening process and reasons for exclusion are presented in the PRISMA‐ScR flow diagram (Figure S1 ).…”

“…The 35 publications included in the scoping review comprised 33 different studies. Of these, 21 studies examined the implementation of specific programmes or care pathways for neurodevelopmental follow‐up care, 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 42 , 44 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 56 and 12 studies reported on surveys or overviews of current clinical practices in neurodevelopmental follow‐up. 9 , 13 , 14 , 15 , 16 , 30 , 37 , 41 , 43 , 45 , 46 , 55 …”

“…All studies were published after 2011, with most (15 out of 21) conducted since 2018. Fourteen of the studies reported on neurodevelopmental care pathways or programmes based in the USA, 27 , 32 , 33 , 34 , 35 , 36 , 38 , 39 , 40 , 42 , 44 , 46 , 47 , 48 , 49 with four in Canada, 50 , 51 , 52 , 56 two in Australia, 31 , 53 , 54 and one in Europe. 28 , 29 All were observational in design, with only four studies using comparator groups.…”

“…Ten programmes described using a database or registry to track patients and their outcomes. 31 , 33 , 34 , 36 , 38 , 42 , 44 , 47 , 50 , 53 …”

“…Most studies (15 out of 21) 32 , 33 , 34 , 35 , 36 , 39 , 44 , 47 , 48 , 49 , 50 , 51 , 52 , 54 , 56 reported on the impact of the neurodevelopmental follow‐up programme/pathway on providing new diagnoses, improving school supports, or increasing subsequent referral and access to appropriate therapies, interventions, or evaluations. Examples of these impacts are provided in Table 2 .…”