Survey and electronic health record-based medication use agreement in children with cystic fibrosis: A retrospective cross-sectional study

Background Medication use is important to collect accurately in medically complex patients in both clinical and research settings. Aim We assessed patient-level agreement for medication use between self-reported survey and electronic health record (EHR) for children with cystic fibrosis (CF). Methods Our retrospective cross-sectional study focused on children with CF ages 6-20 years from Seattle Children's Hospital in Washington state, USA (N = 85). A self- or parent-reported survey included questions on current use of specific medications and antibiotic use in the past 2 months. We compared survey data with data abstracted from the individual's EHR and derived Cohen's Kappa statistics to estimate the level of agreement between the two methods. Results Self-reported medication use was generally higher in the survey than in the EHR. The level of agreement ranged from slight for probiotics (74.1% agreement; 95% confidence interval [CI]: 64.6%-83.6%; kappa: 0.07), pancreatic enzymes (80% agreement; 95% CI: 71.3%-88.7%; kappa: 0.12), and vitamin D (55.3% agreement; 95% CI: 44.5%-66.1%; kappa: 0.20) to moderate for chronic azithromycin (80% agreement; 95% CI: 7.13%-88.7%; kappa: 0.50), proton pump inhibitors (76.5% agreement; 95% CI: 67.3%-85.7%; kappa: 0.46), and oral antibiotics (70.6% agreement; 95% CI: 60.7%-80.5%; kappa: 0.42). Conclusion There is considerable heterogeneity in level of agreement in medication use between self-reported survey and EHR data for children with CF. Standardized approaches are needed to improve the accuracy of medication data collected in clinical practice and research.