Accuracy of the Diagnosis of Bronchopulmonary Dysplasia in a Referral-Based Health Care System

Objective To evaluate the accuracy of the diagnosis of bronchopulmonary dysplasia (BPD) in a national database of a referral-based health care system, where preterm infants are often transferred back to regional hospitals before 36 weeks postmenstrual age (PMA). Study design We evaluated preterm infants <32 weeks, born between 2004 and 2008 in the Academic Medical Center in Amsterdam with a high-risk profile for BPD. In addition to patient characteristics and outcomes, we collected data on respiratory support at 36 weeks PMA. True incidence of BPD, defined as needing supplemental oxygen and/or positive pressure support at 36 weeks PMA, was compared with the diagnosis registered in the National Perinatal Registry. Two imputation algorithms for patients transferred before 36 weeks PMA were validated. Results We identified 243 preterm infants with a high-risk BPD profile. Sixty-seven percent of these infants had a correct BPD diagnosis recorded in the National Perinatal Registry, 2% had a false positive, and 31% a false negative diagnosis. Infants with a false negative diagnosis of BPD were twice as often transferred to a regional hospital before 36 weeks PMA compared with a true positive diagnosis. Imputation algorithms did not improve the accuracy of BPD registration. Conclusions Registration of the diagnosis BPD in a national database in countries with a referral-based health care system may not be accurate. Optimizing data collection and monitoring data entry is necessary to improve BPD registration before data can be used for national and international benchmarking.