Using a statewide population-based data source, we describe current neonatal follow-up referral practices for high-risk infants with developmental delays throughout California.
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.
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.
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.
Comments
Missed Opportunities in the Referral of High-risk Infants to Early Intervention
In the recent article, "Missed opportunities in the referral of high- risk infants to early intervention", Brian Tang and his co-authors reported on the limited success of California Children's Services and California's Perinatal Quality Care Collaborative High-risk Infant Follow- up Quality Care Initiative to provide close monitoring of high-risk infants. They reported that referrals to Early Intervention (EI) were lower than expected. This is the first report, to my knowledge, that shows that specialty follow-up clinics for high-risk infants have the same drop off from screening to referral that has been reported in primary care sites. 1-2
The results are alarming and also differ from what we have found at The Children's Hospital of Philadelphia (CHOP). At CHOP, we have provided interdisciplinary follow-up services to infants born <1500 grams or who had other high-risk neonatal illnesses for close to 30 years. Looking at our most recent full year of data (2011), all of the children who had assessment scores 2 standard deviations (SD) below the mean or scores between 1.5 and 2 SD were receiving services or were referred for services. We considered the possible reasons for our findings. These include: 1) an interdisciplinary team model with an early childhood psychologist as well as medical practitioners with a goal of promoting the optimal well-being of each child, 2) a strong appreciation of the benefits of participation in EI, and 3) state eligibility criteria set at 25% delay or risk for delay which includes prematurity (unlike the 33% delay eligibility criteria in California). In addition to standard developmental assessment, we also provide screening and evaluation for autism and follow children until kindergarten entrance. As there is a prevalence rate of 5% for autism in the low birth weight population 3, this is an important role for neonatal follow-up programs.
Given our findings, we caution against the generalization of Tang's results to other follow-up programs. Neonatal follow-up programs function as a model of care coordination and co-management with primary care for the highest risk children. Using a model that aligns with a medical home model, these programs provide family-centered care. The rates of premature births in the US are generally one in eight live births, thus there remains a great need for follow-up programs to support the health and early developmental progress of these at-risk children.
What the findings from Tang's report and others support is the need for a paradigm shift in thinking about developmental screening. Use of a validated screening or assessment measurement is a first important step but a focus on screening alone is insufficient to reach better child health outcomes. A new model that has been proposed places Screening, Early Identification, Referral, Intake, Eligibility, and Services (SERIES) within a continuum. By adopting this paradigm, families and early intervention providers can come closer to assuring that children who will benefit from EI receive those services.
References 1. Guevara, JP, Gerdes, M, Localio, R, Huang, YV, Pinto-Martin, J. Minkovitz, CS, Hsu, D, Kyriakou, L, Baglivo, S, Kavanagh, J, Pati, S. Effectiveness of Developmental Screening in an Urban Setting: A Randomized Controlled Trial. Paper presented at: Pediatric Academic Societies Annual Meeting; May 1, 2011; Denver, CO 2. Bethell C, Reuland C, Schor E, Abraham M Halfon N. Rates of parent centered developmental screening: Disparities and links to services access. Pediatrics. Jul 2011;128(1):146-155 3. Pinto-Martin, J. et al. Prevalence of Autism Spectrum Disorder in Adolescents Born Weighing <2000 Grams (2011) Pediatrics, 128(5); 883- 891.
Conflict of Interest:
None declared