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Children with hemodynamically significant congenital heart disease can be identified through population-based
Gunnar Bergman1, Ann Hærskjold2, Lone Graff Stensballe2
1Department of Women's and Children's Health, Solna, Karolinska Institutet, Stockholm, Sweden ; Centre for Pharmacoepidemiology, Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden.
Insights
This study developed a validated algorithm to identify children with hemodynamically significant congenital heart disease (CHD) using Swedish health registers. This enables large-scale epidemiological research on this complex pediatric population.
Area of Science:
- Pediatric Cardiology
- Public Health Research
- Health Informatics
Background:
- Swedish national health registers facilitate epidemiological research but have limitations for complex pediatric conditions like congenital heart disease (CHD).
- The International Classification of Diseases, 10th version (ICD-10) diagnostic codes alone are insufficient to determine clinical significance for conditions like CHD.
- Palivizumab prophylaxis is recommended for children with hemodynamically significant CHD to prevent respiratory syncytial virus infections.
Purpose of the Study:
- To develop and validate an algorithm for identifying children with hemodynamically significant CHD in register-based research.
- To enable accurate selection of pediatric patients eligible for palivizumab prophylaxis based on national health data.
- To improve the feasibility of large-scale cohort studies for complex pediatric cardiovascular conditions.
Main Methods:
- Combined criteria including age at diagnosis, diagnostic codes (ICD-10), surgical procedure codes, and dispensing records.
- Developed an algorithm to specifically identify cases of hemodynamically significant CHD meeting palivizumab prophylaxis recommendations.
- Validated the algorithm using sensitivity analysis on children treated with palivizumab and positive predictive value estimation via medical record review.
Main Results:
- The algorithm identified 928 children with hemodynamically significant CHD in the Swedish birth cohort (July 2005-December 2010).
- Achieved a sensitivity of 80% (95% CI: 70-88) when analyzing children treated with palivizumab.
- Demonstrated a positive predictive value of 79% (95% CI: 62-91) through medical record review of algorithm-identified cases.
Conclusions:
- A valid algorithm was developed to identify children with hemodynamically significant CHD using an epidemiological approach.
- This algorithm enhances the ability to conduct well-powered national cohort studies for complex pediatric conditions.
- The findings support improved register-based research for targeted pediatric interventions like palivizumab prophylaxis.
Background:
Epidemiological research is facilitated in Sweden by a history of national health care registers, making large unselected national cohort studies possible. However, for complex clinical populations, such as children with congenital heart disease (CHD), register-based studies are challenged by registration limitations. For example, the diagnostic code system International Classification of Diseases, 10th version (ICD-10) does not indicate the clinical significance of abnormalities, therefore may be of limited use if used as the sole parameter in epidemiological research. Palivizumab is indicated as a prophylactic treatment against respiratory syncytial virus infections in children with hemodynamically significant CHD.
Aim:
The aim of the study reported here was to develop and validate an algorithm to identify children with hemodynamically significant CHD according to recommendations for palivizumab prophylaxis in register-based research.
Methods:
By using a strategy of combining criteria for age at diagnosis, diagnostic codes, surgical procedure codes, and dispensing records, we created an algorithm to define the specific cases with hemodynamically significant CHD in which palivizumab could be advocated according to recommendations.
Results:
The algorithm identified 928 children with hemodynamically significant CHD in the Swedish birth cohort born July 1, 2005 to December 31, 2010. A sensitivity (95% confidence interval) of 80% (70-88) for the algorithm was found by analyzing 121 children identified through local hospital data who were treated with palivizumab within a defined region and study period. The positive predictive value was estimated by medical record review in a random sample of 34 cases identified by the algorithm. In 79% (62-91) of these cases, the children were regarded as having hemodynamically significant CHD according to the recommendations for treatment with palivizumab.
Conclusion:
It was possible to identify a subgroup of children with hemodynamically significant CHD using an epidemiological approach and an algorithm with high validity. Our results will enable well-powered national cohort studies of individuals with complex clinical conditions such as hemodynamically significant CHD.
