ADHD: Do Parents Know If Their Child Has Been Diagnosed?

Susanna Visser, MS

Disclosures|October 21, 2013

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There is new evidence that parent-reported indicators of attention-deficit/hyperactivity disorder (ADHD) are similar to estimates generated from medical records. This lends support for using parent-reported data for monitoring ADHD estimates over time.

Hi. I am Susanna Visser, a lead epidemiologist with CDC's National Center on Birth Defects and Developmental Disabilities, and I am pleased to speak to you as part of theCDC Expert Commentary Series on Medscape.

Medscape recently published an article entitled "Making Sense of the Rise in ADHD" which highlighted a New York Timesanalysis^[1] of data collected by the CDC. The author of the article expressed concern that parent reports of an ADHD diagnosis by a healthcare provider overestimate the frequency with which ADHD is diagnosed. This is a common concern about parent-reported health indicators from health surveys. I would like to tell you about a new study that suggests that the survey estimates of parent-reported ADHD diagnosis by a healthcare provider are similar to estimates generated from medical record review. This comparison was summarized in a research letter published by JAMA Pediatrics^[2] in May 2013.

For the study, we compared our previous state-based parent survey estimates to estimates from a recent study by Getahun and colleagues^[3] that used administrative claims data to estimate the prevalence of ADHD. The researchers used a carefully developed ADHD case definition and administrative claims data from more than 840,000 children enrolled in a large health plan in California to estimate ADHD prevalence. By applying their ADHD case definition to the claims data, the researchers estimated that 4.9% of children 5-11 years of age had been diagnosed with ADHD between 2001 and 2010. We previously concluded that approximately 9.5% of US school-aged children had a parent-reported history of ADHD diagnosis. Upon initial inspection, these estimates appear quite disparate. However, ADHD estimates vary greatly depending on the community from which the data are collected. So, we revisited our analyses and restricted our sample to one that was more similar to that of Getahun and colleagues. Specifically, we restricted our analyses to children with health insurance, living in California, and between the ages of 5 and 11. Once we made these adjustments, the parent-reported estimate of a history of ADHD was 4.7%, which is quite similar to the 4.9% California-based prevalence of Getahun and colleagues.

So, does parent reporting overestimate the true prevalence of ADHD? This cross-study comparison provides some evidence that parent report can closely approximate prevalence estimates that extend from medical record review. Therefore, this gives us confidence that parent-reported survey data can be used as a strategy for monitoring the rates of childhood conditions over time, including ADHD. These data can then be used to inform clinicians and public health officials about ADHD diagnostic and treatment practices, both nationally and within states.

Thank you for taking the time to view this commentary. I invite you to refer to the listed Web resources for additional clinical guidance and best practices for ADHD.

Web Resources

American Academy of Pediatrics. ADHD: Clinical Practice Guideline for the Diagnosis, Evaluation, and Treatment of Attention-Deficit/Hyperactivity Disorder in Children and Adolescents

CDC: ADHD

CDC: Attention-Deficit/Hyperactivity Disorder-Recommendations from the American Academy of Pediatrics

Susanna Visser, MS, came to CDC in 2001 and is the lead epidemiologist for the Child Development Studies Team at CDC's National Center on Birth Defects and Developmental Disabilities. She served as the committee epidemiologist for the American Academy of Pediatrics' 2011 ADHD diagnostic and treatment guidelines committee and has participated in technical expert panels for national surveys directed by the Maternal Child Health Bureau, including the National Survey of Children's Health. Ms. Visser's expertise includes the analysis of longitudinal and population-based survey data as well as the epidemiologic study of neurobehavioral and mental health conditions, including ADHD, autism, and Tourette syndrome. Lead author publications include research related to generating population-based estimates of ADHD, rates of medication treatment among youth with ADHD, and factors associated with ADHD medication treatment. Ms. Visser currently directs federal research contracts investigating developmental outcomes of youth with physical and social health risk factors.