Matching Special Olympics registration data with administrative health databases: feasibility and health status differences in children and youth with IDD

Background — Children and youth with intellectual and developmental disabilities (IDD) experience health disparities. What is unknown is if data collected from children and youth with IDD who participate in Special Olympics is representative of children and youth with IDD who do not.

Objectives — Aim 1: determine the feasibility of matching a database of registrants from Special Olympics Ontario (SOO), with population-based health services databases in Ontario, Canada housed at ICES. Aim 2: evaluate the differences between the database sources with regards to demographic variables and clinical status.

Methods — Using deterministic and probabilistic matching, registration data from SOO were matched to administrative health databases. Established algorithms were used to determine the prevalence of asthma, diabetes, and mental disorder in addition to demographic variables.

Results — The matching rate was over 90%; 8,404 were attributed to children and youth between the ages of 0-19 years. When comparing SOO participants with IDD to non-SOO participants with IDD, children and youth who participate in SOO were, on average, older with no further differences between groups on clinical or demographic variables. When comparing those previously not identified in the health services databases (from SOO) to those with IDD identified by ICES, the SOO participants appear to use the health system less, possibly indicating a better health status.

Conclusions — Research conducted on child and youth who participate in Special Olympics Ontario can be generalized to the broader population of children and youth with IDD in Canada when adjusted for age; however, care should be taken when comparing levels of overall morbidity.