• Kimberley Widger, Christina Vadeboncoeur, Shayna Zelcer, Ying Liu, Alisha Kassam, Rinku Sutradhar, Adam Rapoport, Katherine Nelson, Joanne Wolfe, Craig Earle, Jason D Pole, and Sumit Gupta.
• 1 Paediatric Advanced Care Team, The Hospital for Sick Children , Toronto, Ontario, Canada .
• J Palliat Med. 2017 Nov 1; 20 (11): 1210-1216.

BackgroundPopulation-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown.ObjectiveTo determine the validity of using such data to identify the involvement of specialized pediatric PC teams among children with cancer.DesignRetrospective cohort.SubjectsOntario children with cancer who died between 2000 and 2012, received care through a pediatric institution with a specialized PC team and a clinical PC database.MeasurementsAll patients in the clinical databases were linked to population-based health services administrative databases. Six algorithms were created to indicate the use of formal pediatric PC teams based on the record type (physician billings vs. inpatient records vs. both) and number of eligible codes required (≥1 vs. ≥2). Each was validated against the pediatric PC clinical databases.ResultsThe cohort comprised 572 children; 243 were in the clinical databases. Algorithms using only inpatient records had high specificity (80%-95%) but poor sensitivity (21%-56%). Including physician billings increased sensitivity but lowered specificity. The algorithm with overall best performance required ≥2 physician billing or inpatient diagnosis codes indicating PC [sensitivity 0.79 (95% CI 0.73-0.84), specificity 0.58 (95% CI 0.53-0.64)].ConclusionsHealth administrative data identifies involvement of specialized pediatric PC teams with good sensitivity but low specificity. Studies using such data alone to compare patients receiving and not receiving specialized pediatric PC are at significant risk of misclassification and potential bias. Population-based PC databases should be established to conduct rigorous population-based PC research.

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