Table 2 Highlighted findings for core outcomes according to each data quality concept

Emergency department use

Completeness: Presence or absence and number of emergency department visits since the last clinic visit was reported at 95% of clinic visits

Conformance: Exact dates of emergency department visits were not always reported, but the age at the visit could often be inferred if it occurred between two clinic visits at known ages

Plausibility: Although exhibiting similar trends by age, observed rates are underestimated when compared to a previously published study in Ontario using health care administrative data. Only 42% of expected visits were recorded in the chart

Fasting times

Completeness: Recommended fasting times were updated during approximately 39% of visits. Clinic-specific fasting protocols were provided by some centres, leading to a lack of patient-specific reporting in the chart

Conformance: Fasting prescriptions were frequently reported as a range of time, based on the presence/absence of other interventions, or based on specific times of day

Plausibility: Median fasting times that were explicitly recorded in this sample followed published recommendations by age

Metabolic decompensation

Completeness: Results of monitoring tests that were expected to be ordered were frequently missing and variation was noted in the level of detail recorded or abstracted

Conformance: Episodes were ascertained mainly based on their associated manifestations and rarely directly reported

Plausibility: Median age at decompensation roughly followed known ages during which children with MCAD deficiency commonly exhibit symptoms

Death

Fortunately, death occurred extremely rarely in this cohort. Therefore, data quality for this outcome was not able to be evaluated