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National survey reveals how primary care doctors identify and manage young children with developmental delays

More than half of the estimated 17 percent of children in the United States with developmental disabilities are not diagnosed before they enter school. Yet most primary care physicians are committed to the early diagnosis of developmental delays in young children, according to the first national survey of a random sample of 800 pediatricians and 800 family physicians (response rate of 49 percent). This work was supported in part by the Agency for Healthcare Research and Quality (AHRQ grant K08 HS00002).

Most of the physicians surveyed said they reviewed developmental milestones and prompted parents to voice developmental concerns during preventive care visits. About half of them used a formal developmental screening instrument as part of their routine practice with children ages 1 to 3 years. However, doctors noted that not having enough time and lack of reimbursement were barriers to providing developmental screening.

The survey also revealed great variation in how doctors manage developmental delays, including when they refer children to specialists, underscoring the need for a more standardized approach. In the survey, physicians were asked about factors that might influence their developmental screening practices. The survey presented clinical vignettes, which described young children with probable developmental delays who were seen for preventive care visits, to elicit how physicians manage these children.

Based on survey responses, a girl with language delay was 60 percent more likely to be referred to audiology than a boy. This is a concern because mental retardation and autism spectrum disorders, which are associated with language delay and hearing loss, are more prevalent in boys. Notably, almost 30 percent of physicians did not refer an 18-month-old child with expressive language delay to audiology, a crucial step to rule out hearing loss as the cause of the delay. Audiology referrals increased to 78 percent of doctors when the child's language delay continued to 27 months.

The expression of parental concern, shown to be a reliable indicator of developmental delays, did not increase the probability of referral to diagnostic and treatment services for a child with suspected gross motor delays (for example, delayed walking). Finally, avoidant (for example, not looking at parents/grandparents) rather than disruptive patient behaviors were associated with an increased probability of referral, perhaps because doctors recognized a potential autism spectrum disorder.

For more information, see "How do primary care physicians identify young children with developmental delays? A national survey," by Laura Sices, M.D., Chris Feudtner, M.D., Ph.D., M.P.H., John McLaughlin, M.D., and others, in the December 2003 Journal of Development and Behavioral Pediatrics 24, pp. 409-417; and "How do primary care physicians manage children with possible developmental delays: A national survey with an experimental design," by the same authors, in the February 2004 Pediatrics 113(2), pp. 274-282.

Editor's Note: Another study on a related topic found that higher parental perception of child vulnerability is associated with worse developmental outcomes in premature infants at 1-year of age. For more details, see Allen, E.C., Manuel, J.C., Legault, C., and others (2004, February). "Perception of child vulnerability among mothers of former premature infants" (AHRQ grant HS07928). Pediatrics 113(2), pp. 267-273.

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