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Positive predictive value of congenital heart disease diagnostic codes in the Danish National Patient Registry
Sara S Schwartz1, Mette Gb Pedersen1,2, Trine Frøslev1
1Department of Clinical Epidemiology, Aarhus University Hospital, Olof Palmes Allé 43-45, Aarhus, Denmark.
Insights
The Danish National Patient Registry shows a high positive predictive value (PPV) for congenital heart disease (CHD) diagnoses. However, PPVs for specific CHD subtypes were lower, indicating potential data limitations for detailed epidemiological research.
Area of Science:
- Cardiology
- Public Health
- Epidemiology
Background:
- Congenital heart disease (CHD) is a significant public health issue, being the most common birth defect with increasing adult prevalence.
- Accurate data on CHD is crucial for effective clinical and epidemiological research.
Purpose of the Study:
- To assess the positive predictive value (PPV) of congenital heart disease (CHD) diagnoses and related surgeries recorded in the Danish National Patient Registry (DNPR).
- To evaluate diagnostic validity using predefined exclusion criteria for ICD-8 and ICD-10 codes.
Main Methods:
- A sample of 480 patients with CHD diagnoses in Central Jutland (1977-2013) was randomly selected.
- Medical record review served as the reference standard to compute PPVs for CHD diagnoses, subtypes, and surgeries.
- Reviews were conducted by blinded pediatric cardiology nurses, with cardiologist consultation for uncertainties.
Main Results:
- Medical records were reviewed for 463 patients (96% of the sample).
- The overall PPV for CHD diagnoses in the DNPR was high at 95.5% (95% CI: 93.3-97.1).
- PPVs for specific CHD subtypes were generally lower (e.g., 69% for atrial septal defect), and the PPV for CHD-related surgery codes was 92.7%.
Conclusions:
- The Danish National Patient Registry demonstrates high overall accuracy for congenital heart disease diagnoses.
- Lower PPVs for specific CHD subtypes suggest limitations for detailed subtype epidemiological studies using registry data.
Background:
Congenital heart disease (CHD) is a public health concern as the most common birth defect with growing prevalence in adults. Valid CHD data are critical in clinical epidemiological CHD research.
Objectives:
To evaluate the positive predictive value (PPV) of having a CHD diagnosis and related surgery registered in the population-based Danish National Patient Registry (DNPR) according to the International Classification of Diseases, 8th and 10th revision, using predefined exclusion criteria to increase diagnostic validity.
Methods:
Using medical record review as reference standard, we computed the PPV of registered diagnostic codes for CHD and CHD subtypes including 95% confidence intervals (CIs) as well as the PPV of presence of CHD-related surgery. A sample of 480 patients diagnosed with CHD at any hospital in the Central Jutland region, during 1977-2013, was randomly selected for the medical record review. Reviews were performed by two paediatric cardiology nurses, blinded to the specific CHD diagnosis, and a paediatric cardiologist was consulted in cases of uncertainty.
Results:
We located medical records of 463 of the 480 patients included (96%), and found an overall PPV of the CHD diagnosis of 95.5 (95%CI: 93.3-97.1). Subtype specific PPVs were generally lower. In example PPV for atrial septal defect was 69%. It increased to 78% after inclusion of persistent foramen ovale in the reference standard subtype definition. The overall PPV of CHD-related surgery codes was 92.7.
Conclusions:
The overall PPV of CHD diagnoses in the DNPR is high. Data indicated lower PPVs for CHD subtypes.
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