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Identifying Pediatric Long COVID: Comparing an EHR Algorithm to Manual Review
Morgan Botdorf1, Kimberley Dickinson1, Vitaly Lorman1
1Applied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States.
Insights
A new computable phenotype (CP) identifies pediatric long COVID using electronic health records. While moderate agreement with chart review exists, accounting for pre-existing conditions improves accuracy, aiding research and definition development.
Area of Science:
- Pediatric Health
- Infectious Diseases
- Medical Informatics
Background:
- Long COVID presents diagnostic challenges in children due to a lack of standardized definitions.
- Existing adult-focused phenotypes are not suitable for pediatric populations.
- Pediatric-specific phenotypes require validation against clinical data.
Purpose of the Study:
- To develop and evaluate a pediatric-specific, rule-based computable phenotype (CP) for identifying long COVID.
- To compare the CP's performance against manual chart review in a large pediatric cohort.
- To analyze discrepancies between CP identification and clinician assessment.
Main Methods:
- Applied a CP using diagnostic codes to over 339,000 pediatric patients with SARS-CoV-2 infection in the RECOVER PCORnet EHR database.
- Conducted manual chart reviews on a subset of patients (n=651) across 16 hospital systems for performance assessment.
- Qualitatively reviewed discordant cases to understand differences in identification criteria.
Main Results:
- The CP identified 31,781 pediatric long COVID cases with moderate agreement (accuracy=0.62) compared to chart review.
- Discrepancies often arose from clinicians attributing symptoms to pre-existing conditions or using broader criteria.
- Improved CP performance (accuracy=0.71) when accounting for pre-existing conditions.
Conclusions:
- A pediatric-specific CP for long COVID shows moderate but improvable agreement with clinical review.
- Addressing pre-existing conditions in CP development is crucial for accurate pediatric long COVID identification.
- This study supports the creation of scalable tools for pediatric long COVID research and definition consensus.
Abstract:
Long COVID, characterized by persistent or recurring symptoms post-COVID-19 infection, poses challenges for pediatric care and research due to the lack of a standardized clinical definition. Adult-focused phenotypes do not translate well to children, given developmental and physiological differences, and pediatric-specific phenotypes have not been compared with chart review.This study introduces and evaluates a pediatric-specific rule-based computable phenotype (CP) to identify long COVID using electronic health record data. We compare its performance to manual chart review.We applied the CP, composed of diagnostic codes empirically associated with long COVID, to 339,467 pediatric patients with SARS-CoV-2 infection in the RECOVER PCORnet EHR database. The CP identified 31,781 patients with long COVID. Clinicians conducted chart reviews on a subset of patients across 16 hospital systems to assess performance. We qualitatively reviewed discordant cases to understand differences between CP and clinician identification.Among the 651 reviewed patients (339 females, M age = 10.10 years), the CP showed moderate agreement with clinician identification (accuracy = 0.62, positive predictive value [PPV] = 0.49, negative predictive value [NPV] = 0.75, sensitivity = 0.52, specificity = 0.84). Performance was largely consistent across age and dominant variant but varied by symptom cluster count. Most discrepancies between the CP and chart review occurred when the CP identified a case, but the clinician did not, often because clinicians attributed symptoms to preexisting conditions (73%). When clinicians identified cases missed by the CP, they often used broader symptom or timing criteria (69%). Model performance improved when the CP accounted for preexisting conditions (accuracy = 0.71, PPV = 0.65, NPV = 0.74, sensitivity = 0.59, specificity = 0.79).This study presents a CP for pediatric long COVID. While agreement with manual review was moderate, most discrepancies were explained by differences in interpreting symptoms when patients had preexisting conditions. Accounting for these conditions improved accuracy and highlights the need for a consensus definition. These findings support the development of reliable, scalable tools for pediatric long COVID research.
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