Objective: Knowing the prevalence of mental health difficulties in young children is critical for early identification and intervention. In the current study, we examine the agreement among three different data sources estimating the prevalence of diagnoses for attention deficit hyperactivity disorder (ADHD) and emotional disorders (i.e., anxiety or mood disorder) for children between birth and 9 years of age.
Methods: Data from a prospective pregnancy cohort was linked with provincial administrative health data for children in Alberta, Canada. We report the positive agreement, negative agreement, and Cohen's Kappa of parent-reported child diagnoses provided by a health professional ("parent report"), exceeding a clinical cut-off on a standardized questionnaire completed by parents (the Behavior Assessment System for Children, 3rd edition ["BASC-3"]), and cumulative inpatient, outpatient, or physician claims diagnoses ("administrative data").
Results: Positive and negative agreement for administrative data and parent-reported ADHD diagnoses were 70.8% and 95.6%, respectively, and 30.5% and 94.9% for administrative data and the BASC-3, respectively. For emotional disorders, administrative data and parent-reported diagnoses had a positive agreement of 35.7% and negative agreement of 96.30%. Positive and negative agreement for emotional disorders using administrative data and the BASC-3 were 20.0% and 87.4%, respectively. Kappa coefficients were generally low, indicating poor chance-corrected agreement between these data sources.
Conclusions: The data sources highlighted in this study provide disparate agreement for the prevalence of ADHD and emotional disorder diagnoses in young children. Low Kappa coefficients suggest that parent-reported diagnoses, clinically elevated symptoms using a standardized questionnaire, and diagnoses from administrative data serve different purposes and provide discrete estimates of mental health difficulties in early childhood.
Plain language title: Prevalence of child mental health disorders according to different data sources in Canada.
Objectif: Connaître la prévalence des problèmes de santé mentale chez les jeunes enfants est essentiel pour une identification et une intervention précoces. Dans la présente étude, nous examinons la concordance entre trois sources de données différentes estimant la prévalence des diagnostics de trouble déficitaire de l'attention avec hyperactivité (TDAH) et de troubles émotionnels (c'est-à-dire anxiété ou trouble de l'humeur) chez les enfants entre la naissance et 9 ans.
Méthode: Les données ont été liées aux données de santé administratives provinciales pour enfants en Alberta, Canada. Nous signalons l’entente positive, l’entente négative et le Kappa de Cohen des diagnostics d’enfant fournis par un professionnel de la santé (« rapport de parent »), le dépassement d'un seuil clinique sur un questionnaire standardisé rempli par les parents (le Behaviour Assessment System for Children, 3e édition (« BASC-3 »)) et les diagnostics cumulatifs de patients hospitalisés, ambulatoires ou de réclamations médicales (« données administratives »).
Résultats: La concordance positive et négative pour les données administratives et les diagnostics de TDAH signalés par les parents était de 70,8% et 95,6%, respectivement, et de 30,5% et 94,9% pour les données administratives et le BASC-3, respectivement. Les troubles émotionnels, les données administratives et les diagnostics déclarés par les parents présentaient une concordance positive de 35,7% et une concordance négative de 95,0%. La concordance positive et négative pour les troubles émotionnels utilisant les données administratives et le BASC-3 était respectivement de 20,0% et 87,4%. Les coefficients Kappa étaient généralement faibles, ce qui indique une mauvaise concordance corrigée du hasard entre ces sources de données.
Conclusions: Les sources de données mises en évidence dans cette étude fournissent un accord disparate sur la prévalence des diagnostics de TDAH et de troubles émotionnels chez les jeunes enfants. Les faibles coefficients Kappa suggèrent que les diagnostics rapportés par les parents, les symptômes cliniquement élevés à l'aide d'un questionnaire standardisé et les diagnostics tirés de données administratives servent des objectifs différents et fournissent des estimations discrètes des difficultés de santé mentale dans la petite enfance.
Keywords: ADHD; TDAH; administrative data; anxiety disorder; données administratives; early identification; identification précoce; mood disorder; prevalence; prévalence; troubles de dépression; troubles de l'anxiété.
Knowing the prevalence of mental health difficulties in young children is critical for informing mental health policy and decision-making. Yet, different sources yield different estimates and we do not know how these estimates compare. In the current study, we examine the agreement among three different information sources estimating the prevalence of diagnoses for attention deficit hyperactivity disorder (ADHD) and emotional disorders (i.e., anxiety or mood disorder) for children between birth and 9 years of age. To estimate the prevalence of mental disorders, we asked parents if their child had ever been diagnosed, we asked parents to complete a questionnaire using clinical symptom cut-offs for diagnosis, and we looked at data collected in the health care system to see if a child was ever diagnosed by a healthcare provider. We found that for ADHD, parent report that their child had received a diagnosis and their child having received a diagnosis in the healthcare system were similar. There were larger differences between a parent report of elevated symptoms on a questionnaire and whether they had been diagnosed by a healthcare provider. For emotion disorders, there were larger differences between parent report that their child had received a diagnosis and whether one was documented in the health record. Overall, there was somewhat low agreement between these three sources of data. We conclude that the different sources of data used in this study provide different estimates of ADHD and emotional disorder diagnoses in children. Therefore, when trying to understand the burden of child mental health disorders in young children, it is important to consider multiple sources to obtain a comprehensive picture of the issue.