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Towards a Critical Reframing of Early Detection and Intervention for Developmental Concerns.

Paul H. Dworkin, MD In 2002, in response to research from the Centers for Disease Control and Prevention (CDC) suggesting that autism rates were at least 10 times higher than found in previous studies, Congress mandated the establishment of a national awareness and education program to disseminate information regarding autism identification and diagnosis to families and health care providers. The CDC responded to the mandate by developing the “Learn the Signs. Act Early” campaign (LTSAE) (www.cdc.gov/ActEarly). The developers of LTSAE wisely recognized the need to involve health care professionals, parents, and early educators in formative research, message and material testing, and a baseline survey before dissemination. This communication research, which consumed more than 1 year, profoundly informed the content of the campaign by yielding 2 key recommendations: that the campaign’s primary focus be expanded from the early detection of autism to that of children with a broad range of developmental concerns; and that the campaign should explicitly focus on the importance of monitoring children’s development. Furthermore, the results also directly informed the campaign’s strategic approach, objectives, messages, and materials. For example, the priority audience of the campaign shifted to low-income parents whose children are particularly vulnerable to adverse developmental outcomes as a consequence of economic disadvantage, rather than families of children identified with a disability at birth or soon thereafter.1 Since its inception, research and evaluation has continued to be a critical component of this health communication campaign. In this issue of the journal, Raspa et al2 report on the most recent assessment of LTSAE’s approach and materials. Their evaluation is worthy of readers’ careful attention for several reasons. Perhaps most obvious is the extent to which findings reinforce key principles of successful early detection. For example, findings emphasize the critical importance of parent engagement and eliciting parents’ opinions and concerns. Parents were typically the first to express a concern about their child’s development and often compared their children’s development with other children of the same age to determine whether their child was developing differently. Past research has demonstrated the validity of parents’ appraisals of their children’s development, including such concerns and estimations.3 The finding that most participants discussed their concerns with their child’s health care provider reinforces the critical role of the pediatrician in both eliciting and responding to parents’ concerns and opinions—key tenets of the American Academy of Pediatrics’ (AAP) policy statement on identifying children with developmental disorders in the medical home.4 As noted by the authors, findings also support the belief that parents and health care providers should routinely discuss children’s development, review milestones, and address parents’ questions and concerns. Furthermore, the authors’ acknowledgment of the utility of screening tools in guiding conversations with parents and enabling parents to raise concerns more frequently confirms the value of monitoring children’s progress through the AAP-recommended integrated process of developmental surveillance and screening. Other findings reinforce the importance of addressing barriers to successful early detection and intervention. In particular, although parents’ appreciated and understood the importance of the “early” aspect of the LTSAE message, they did not equally understand the “action” component, and study participants felt that materials were less clear on how to act early. For example, many participants wanted more specific contact information about whom to call with their developmental concerns. Parents’ seeking of help was further compromised when a cohort of child health providers assumed a “wait and see” approach. These findings are consistent with research demonstrating significant gaps between the identification of concerns and the receipt of developmental services by children and families. This gap has encouraged researchers to call for increasing awareness of the need for better care coordination across systems involved in meeting the developmental needs of children. For example, Kavanagh et al5 have proposed a coordinated approach to meeting children’s developmental needs through the adoption of the SERIES paradigm of From the Help Me Grow National Center, Office for Community Child Health, Connecticut Children’s Medical Center, Department of Pediatrics, University of Connecticut School of Medicine, Hartford, CT.