Quality of heart failure registration in primary care: observations from 1 million electronic health records in the Amsterdam Metropolitan Area

Abstract Objectives Proper coding of heart failure (HF) in electronic health records (EHRs) is an important prerequisite for adequate care and research towards this vulnerable patient population. We set out to evaluate the accuracy of registration of HF diagnoses in primary care EHRs. Methods In a routine primary care database covering the Amsterdam Metropolitan Area, we identified all episodes of care with International Classification of Primary Care (ICPC) codes K77 (decompensatio cordis) or K84.03 (cardiomyopathy) up to 31/12/2021. We also performed two text-based searches to identify HF episodes without an appropriate ICPC-code. An expert panel evaluated all ICPC and text matches for congruence between the assigned codes and notes. Results From a database of 968,433 records we identified 19,106 patients (2.0 %) with a total of 24,011 ICPC-coded HF episodes. Removal of 1,324 episodes found to concern other or uncertain diagnoses and inclusion of 4,582 validated HF episodes identified through text search led to exclusion of 909 (overregistration: 4.8 %) and inclusion of 2,266 additional patients (underregistration: 11.1 %). The inclusion of miscoded HF episodes advanced the first known date of HF diagnosis in 3.9 % of records, with a median shift of 3.45 years. Episode-level underregistration decreased significantly over time, from 23.8 % in 2006 to 10.0 % in 2021. Conclusions While there is improvement over time, there are still substantial levels of over- and underregistration of HF, emphasizing the need for cautious interpretation of ICPC-coded data. The findings contribute to the understanding of HF registration issues in primary care and provide insights for improving registration practices.