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Identification of Childhood-Onset Inflammatory Bowel Disease in Swedish Healthcare Registers: A Validation Study
Natalia Mouratidou1,2, Petter Malmborg2,3, Jacob Järås2
1Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.
Insights
The Swedish National Patient Register (NPR) accurately identifies childhood-onset inflammatory bowel disease (IBD). This study validates register-based algorithms, confirming their high reliability for observational research on pediatric IBD.
Area of Science:
- Pediatric Gastroenterology
- Health Informatics
- Epidemiology
Background:
- The Swedish National Patient Register (NPR) is a valuable resource for studying childhood-onset inflammatory bowel disease (IBD).
- Previous studies have relied on register-based algorithms for identifying pediatric IBD cases, but their accuracy has not been validated.
- Validating these algorithms is crucial for ensuring the reliability of observational research on childhood IBD.
Purpose of the Study:
- To assess the validity of register-based algorithms for identifying childhood-onset IBD and its subtypes in the Swedish National Patient Register (NPR).
- To determine the accuracy of using the NPR for capturing pediatric IBD cases in observational studies.
Main Methods:
- A random sample of 233 individuals with at least two IBD diagnostic listings in the NPR (2002-2014) was identified.
- Test characteristics (PPV, sensitivity, specificity, NPV) were calculated using Copenhagen and revised Porto criteria (gold standard via chart review).
- Assumptions regarding undiagnosed IBD prevalence were based on existing literature.
Main Results:
- The study found a high positive predictive value (PPV) of 93% for identifying childhood-onset IBD in the NPR.
- Sensitivity was 88%, specificity 100%, and negative predictive value (NPV) 100%, indicating high accuracy.
- PPVs for IBD subtypes (Crohn's disease, ulcerative colitis) ranged from 71% to 88% at different time points.
Conclusions:
- Register-based definitions for childhood-onset IBD in the Swedish NPR demonstrate high validity.
- The NPR is a reliable tool for identifying pediatric IBD patients for use in observational research.
- These findings support the continued use of the NPR in epidemiological studies of childhood IBD.
Purpose:
The Swedish National Patient Register (NPR) is often used in observational studies of childhood-onset inflammatory bowel disease (IBD) (<18 years of age) and its subtypes, but the validity of previously used register-based algorithms for capturing childhood-onset IBD has never been examined.
Methods:
We identified a random sample of 233 individuals with at least two first ever diagnostic listings of IBD in the NPR between 2002 and 2014. We calculated the test characteristics for different register-based definitions of IBD and its subtypes using the Copenhagen criteria and the revised Porto criteria as gold standard, both based on medical chart review. We made assumptions of the occurrence of undiagnosed IBD in the general child population based on available literature.
Results:
Out of 233 individuals with at least two diagnostic listings of IBD, 216 had true IBD, resulting in a positive predictive value (PPV) = 93% (95% confidence interval (CI) 89-96), sensitivity = 88% (95% CI 83-92), specificity = 100% (95% CI 100-100), and negative predictive value (NPV) = 100% (95% CI 100-100). The PPV for the NPR-based definitions of IBD subtypes at time of first IBD diagnosis and at end of follow-up were 78% (95% CI 69-86) and 88% (95% CI 80-94), respectively, for Crohn's disease and 74% (95% CI 63-83) and 71% (95% CI 60-80), respectively, for ulcerative colitis.
Conclusion:
The validity of register-based definitions of childhood-onset IBD in the Swedish NPR is high and can be used to identify patients in observational research.
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