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Stephen Porter, MD, MPH, and Eugenia Chan, MD, MPH |
Properly treating attention deficit hyperactivity disorder (ADHD) requires consistent monitoring of a child's symptoms, medications, behaviors and side effects. Paper-based questionnaires from the National Initiative for Children's Healthcare Quality—namely, the Vanderbilt Assessment, a method to establish the frequency of symptoms and diagnose—have been proposed for use in primary care, with parents as the logical choice to manage this task.
"But this can present challenges, since sometimes these forms gets filled out, sometimes not," says Stephen Porter, MD, MPH, a specialist in pediatric emergency medicine and medical informatics at Children's Hospital Boston. "There's very little systematic data collection going on that can be used to help doctors gauge a drug's effectiveness in ADHD. Physicians solicit bigger, gestalt opinions from parents—like whether a drug is working or—but don't necessarily drill down to what types of behavior it's working for and why."
Since this pen-and-paper process has been inefficient at capturing information necessary for the routine, systematic monitoring of children with ADHD, Dr. Porter decided to make use of computer technology and the Internet. He collaborated with William Gribbons, PhD, a professor at Bentley College in Waltham, to design a Web-based data entry tool for parents to regularly update doctors about their child's ADHD.
The program guides parents through each step of reporting the relevant information on ADHD, with a built-in mechanism to ensure that questions aren't skipped over.
Eugenia Chan, MD, MPH, assistant in Medicine and an ADHD specialist, helped develop the program. She hopes that teachers will also use it to provide input on a child's behavior at school. Ideally, teachers' feedback would help doctors manage cases, but they are even less likely than parents to respond to the standard paper questionnaire. Dr. Chan thinks the Web-based system will motivate more teachers to provide feedback on a regular basis.
The project is being piloted at Children's. Parents are randomized to use either the new electronic program or the standard paper questionnaire, and their responses are analyzed to gauge whether using the computerized system results in either different data or a different experience. "We're finding out what works for parents and what doesn't," Dr. Porter says. "But parents feel that this is something designed for them, not a generic black-and-white form."
Dr. Porter would like to expand the program to become part of the patient portal—an electronic data exchange and medical record system developed at Children's. "ADHD is supposed to be owned by primary care, but it leaves a lot of primary care doctors with questions about the right things to do," he says. "Ideally, ADHD care should use data that's shared and owned by parents, primary care physicians and a referral place like Children's, where specialists could offer insight based on information from parents."
More information: childrenshospital.org/adhd
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