Children with suspected development problems may not get needed referrals, study shows

Many pediatricians score high on screening their patients for developmental delays, but barely make a passing grade in referring children with suspected delays for further testing or treatment, according to a study from Johns Hopkins Children's Center and other institutions to appear in the February issue of Pediatrics.

Because screening is only effective if followed by referral and treatment, pediatricians need two separate formalized systems in their practices — one for screening and one for referral — the investigators write in their report available online Jan. 25.

The report also notes that pediatricians, and their patients, would fare better if the doctor's office places the referral on a patient's behalf instead of handing the family a phone number to do so on their own.

In 2006, the American Academy of Pediatrics (AAP) issued guidelines that call for informal clinical evaluation of development of all children younger than 3 years during all well-child visits, and the use of a standard developmental screening test in all children at ages 9, 18 and 24 (or 30) months. The AAP recommends that children who fail a screening test be referred to a specialist for more testing and to an early intervention program.

The new study, launched as an AAP project to improve screening and referral, analyzed screening and referrals over nine months among 17 pediatric practices in 15 states, whose physicians and staff were trained on the new AAP guidelines.

Although screening rates improved from 68 percent of patients to 85 percent of patients after the training, referrals remained low, with only 61 percent of those with suspected delays sent for further testing and therapy.

Among pediatricians who referred patients for further testing and treatment, many failed to follow up with the family to check whether the family acted on the referral. The investigators say many families don't follow up and some don't understand the reason for the referral in the first place.

In addition, the investigators said, even when pediatricians did refer, their patterns were all over the map, with most pediatricians failing to refer children to both a specialist and an early intervention program, but choosing one or the other.

"The ultimate goal of screening is to improve outcomes for children with developmental delays, but in our study we found that many pediatricians did not act properly even when serious red flags were present," said lead researcher Tracy King, M.D. M.P.H., a pediatrician at Hopkins Children's. "This is where we should focus our efforts: making sure that more children with suspected delays get referred for testing and therapy."

King and colleagues say referrals work best if they are placed by the pediatrician's office on the patient's behalf and tracked much like any other medical referral. Historically, referrals for developmental delays have not been treated as medical referrals but rather informally, by handing the parents a phone number and telling them to follow up with an early intervention program or a therapy provider.

Follow-up is critical because children with developmental delays who are treated promptly fare better than those who get delayed treatment or no treatment at all, King said. For example, a child with a speech problem who receives early speech-language therapy will improve faster and do better in the long run than a child who is either not identified until later or whose referrals are not acted upon.

To increase referral and follow-up, each practice should establish a separate referral log and tracking system that prompts staff, nurses and doctors not only to refer a patient, but to call and check with the family periodically to ensure action.

Other findings from the study include:

• While nine of the 17 practices reported conducting developmental screening prior to the training, none of the 17 practices were following AAP screening guidelines.
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• After the training, all practices incorporated successfully AAP-recommended screening into their clinic routines.
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• Fourteen percent of all screened children during the nine-month study failed a developmental screening, a red flag signaling possible developmental delays.
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• Referrals ranged from 27 percent to 100 percent among the 17 practices, with an average of 61 percent.
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• Unlike screening rates, referral rates did not increase over time. They dropped down even further during the second half of the nine-month study with just over half of the children who failed a screening test getting a referral.
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The most common deterrent to universal use of standard screening tools was fear that the time it takes might slow down patient flow.

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