Positive predictive value of the infant respiratory distress syndrome diagnosis in the Danish National Patient Registry

Sandra Kruchov Thygesen, Morten Olsen, Christian Fynbo Christiansen

Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark

Background: Infant respiratory distress syndrome (IRDS) is the most common respiratory disease in preterm infants, and is associated with considerable morbidity and mortality. Valid data on IRDS are important in clinical epidemiological research.
Objectives: The objective of this study was to estimate the positive predictive value (PPV) of the IRDS diagnosis registered in the population-based Danish National Patient Registry according to the International Classification of Diseases, 8th and 10th revisions.
Methods: Between January 1, 1977 and December 31, 2008, we randomly selected three patients per year, 96 in total, who were registered with an IRDS diagnosis in the Danish National Patient Registry and living in the northern part of Denmark. Data on the infants included information on the presence of predefined clinical symptoms. We defined IRDS as the presence of at least two of four clinical symptoms (tachypnea, retractions or nasal flaring, grunting, and central cyanosis), which had to be present for more than 30 minutes. Using medical record review as the reference standard, we computed the positive predictive value of the registered IRDS diagnosis including 95% confidence intervals (CIs).
Results: We located the medical record for 90 of the 96 patients (94%), and found an overall PPV of the IRDS diagnosis of 81% (95% CI 72%–88%). This did not vary substantially between primary and secondary diagnoses. The PPV was higher, at 89% (95% CI 80%–95%), for preterm infants born before 37 weeks of gestation.
Conclusion: The PPV of the IRDS diagnosis in the Danish National Patient Registry is reasonable when compared with symptoms described in the corresponding medical records. The Danish National Patient Registry is a useful data source for studies of IRDS, particularly if restricted to preterm infants. Nonetheless, the potential impact of misclassification of the IRDS diagnosis must be considered.

Keywords: epidemiology, data quality, validity, positive predictive value, hospital diagnosis, respiratory distress syndrome