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Children with Special Needs researchers get important funding


Pediatricians today are faced with a significant problem: children with a variety of developmental and behavioral issues are not being diagnosed as promptly as they could be.

“The earlier these problems are identified,” said Ellen C. Perrin, MD, Director of Research for the Center for Children with Special Needs (CCSN) at Tufts Children's Hospital at Tufts Medical Center, “the more effective the treatment and services will be.”

It is becoming increasingly commonplace for pediatric practices to offer early childhood screening for these developmental and behavioral problems. Unfortunately, the screening tools currently available are often costly and somewhat lengthy for use in regular pediatric care.

“There was room for a new kind of survey and we thought we could create one that was better than the available options,” said Perrin. So in 2008, Perrin and colleague R. Christopher Sheldrick, PhD, Research Psychologist at CCSN, set out to develop an improved survey to accurately identify developmental and behavioral issues in young children, without the drawbacks of mainstream questionnaires.

The final result was the Survey of Wellbeing of Young Children (SWYC), a screening tool that is quick to complete (an average of 15 minutes), with clear, easy-to-answer questions. Designed for children five years old and younger, the SWYC is completely free, easily administered by computer or phone and is available in Spanish; questions are short, self-explanatory and can be answered in a yes/no/maybe format.

The SWYC also is unique because it combines all critical aspects of child development in one survey: cognitive, motor, and language development, social and emotional development, Autism Spectrum Disorder (ASD) and family risk factors (i.e. depression, alcohol and drug abuse and parental conflicts). The SWYC was the first survey in which all these important aspects could be examined and analyzed in one screening instrument.

NIH grant funds comparative effectiveness trial

The next step for Perrin and Sheldrick is to test the accuracy of the SWYC to determine if it shows results comparative to current surveys. In August, 2011, Perrin and Sheldrick applied for a National Institutes of Health (NIH) grant to support a comparative effectiveness trial to analyze the performance of three screening tools, including the SWYC. In January, 2013, they received word that the grant had been funded for more than $3.25 million over five years.

“We think our survey has advantages in ease of use, convenience and cost-efficiency,” said Perrin, “but this study will allow us to assess its accuracy, head-to-head, with two other prominent screening instruments. The results will help pediatricians choose the best screener for their patients.”

The systematic comparison study to measure the SWYC against the other two screenings tools is already underway. The study is based in Boston and involves numerous pediatric centers in Eastern and Central Massachusetts. When children under the age of five make a routine visit to their participating pediatric practice, their parents will have the opportunity to complete three surveys about the kids (the two current surveys and the SWYC). Parents also have the option of taking the survey home to complete and send back later. Some children will then be evaluated with a full clinical assessment of developmental and behavioral characteristics, to gauge the accuracy of each screening instrument.

The future of the SWYC and developmental-behavioral screening

Depending on the results of the trial, the SWYC could emerge as a useful pediatric screening instrument or even be utilized as a first-stage screening tool in tandem with other tests. But regardless of the study’s eventual outcome, Perrin and Sheldrick agree that it is critical for parents to expect that their young children receive some type of behavioral and developmental screening from their pediatrician. “The bottom line is we are committed to providing pediatricians with the best evidence-based advice that we can for accurately diagnosing behavioral and developmental abnormalities in young children,” said Sheldrick. “Both children and their families will benefit that way.”