Referral Trends of Young Children Screened for Developmental Delay and Autism: Results from National Surveys of Pediatricians, 2002-2016

Michelle M. Macias¹, Susan E. Levy², Paul H. Lipkin³, Daniel Coury⁴, Susan L. Hyman⁵, Audrey Wolfe⁶, Briella Baer³, Blake Sisk⁷.

¹Pediatrics, Medical University of South Carolina, Charleston, SC; ²Developmental Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA; ³Medical Informatics, Kennedy Krieger Institute, Baltimore, MD; ⁴Nationwide Children's Hospital, Columbus, OH; ⁵Pediatrics, University of Rochester, Rochester, NY; ⁶Pediatrics, Massachusetts General Hospital, Boston, MA; ⁷Research, American Academy of Pediatrics, Elk Grove Village, IL.

Presented at the 2017 Pediatric Academic Societies Annual Meeting.

Background: Current guidelines for toddlers at-risk on general developmental and autism screening in pediatric primary care include referral to state-based Early Intervention (EI) and pertinent subspecialists. However, little is known about trends in pediatricians' referral practices and perceptions.

Objective: To examine trends from 2002-2016 in pediatrician EI referral practices, conditions leading to referral to EI/specialists, and barriers to EI referral for children <36 months of age identified with a possible developmental problem via screening and who are at-risk for developmental delay/autism.

Methods: Data were from nationally representative surveys of American Academy of Pediatrics U.S. members. Responses on developmental and autism referral practices were compared across surveys from 2002 (n=392; response rate=55%) and 2016 (n=377; 47%). Analysis was restricted to non-trainees who reported screening for developmental delay/autism. Respondents reported having referred an at-risk patient to EI (2002 and 2016) or specialist (2016), conditions leading to EI or specialist referral, and barriers to EI referral. T-tests were used to assess differences across surveys.

Results: From 2002-2016, pediatricians reporting having made referrals of children at-risk for developmental delay/autism to EI increased from 91% to 97% (OR 3.46, 95% CI 1.74-6.91, p<.001). In 2016, 79% report having referred at-risk patients to specialists prior to referring to EI (2002 not available). Pediatricians in 2016 were more likely than in 2002 to report being "very likely" to refer a patient to EI with global developmental delay, milestone loss, language delay, sensory impairment, motor delays, and family concern (p<.05). For referral to specialists, there was an increase in the reported likelihood to refer for global developmental delay and those at risk of neglect (p<.05). Lack of information about EI programs declined as a reported barrier to referral (18% "strongly agreeing" in 2002; 11% in 2016). Also, fewer in 2016 reported a lack of understanding of EI procedures as a barrier (p<.05).

Conclusions: More pediatricians are making referrals for children with concerns in developmental or autism screening, as they consider a wider set of conditions that lead to referral and perceive fewer barriers to referral. While challenges remain, this reflects growing awareness among pediatricians about current guidelines and the importance of EI/specialist referrals to improving outcomes for at-risk children.