Child and Youth Chronic Physical Health Conditions: A Comparison of Survey Data and Linked Administrative Health Data in Ontario

Background : Population-based studies in Canada and the United States estimate chronic physical health conditions affect between 20% to 30% of children aged 0 to 17. One challenge in measuring chronic conditions is that researchers often use inconsistent definitions. The main objective was to develop a chronic health condition (CHC) algorithm. We identified three main elements that must be incorporated from administrative data to determine whether a child has a CHC: (1) the diagnosis recorded for the visit, (2) the number of visits, and (3) within a specific reference period. Methods : Data were from the cross-sectional 2014 Ontario Child Health Study, linked with Ontario Health Insurance Plan (OHIP) data. Unweighted prevalence estimates and agreement analyses (Cohen’s Kappa, sensitivity, specificity) were used to compare the survey parent-reported and algorithm-based presence of a CHC. Results : 31.59% and 26.7% of children and youth had a CHC based on administrative and survey data, respectively. Agreement between administrative and survey data was poor ( k = 0.16). Among a few specific conditions, agreement varied depending on the type of condition (e.g., diabetes k = 0.79 vs health conditions k = 0.21). Conclusion : We found considerable discrepancies between administrative and survey-reported data. The results highlight the importance of using algorithms developed from multiple datasets to examine complex research questions, such as the measurement of chronicity.