ArticleJournal of blood medicine2017
Identification of patients with congenital hemophilia in a large electronic health record database.
Article in Journal of blood medicine, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.
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Who cites it
6 citing papers in PubMed, 1 synthesis or guideline pooled it, 10 citations in OpenAlex.
- Using natural language processing to extract information from clinical text in electronic medical records for populating clinical registries: a systematic review.Journal of the American Medical Informatics Association : JAMIA · 2026Pooled it
- Targeting the Liver with Nucleic Acid Therapeutics for the Treatment of Systemic Diseases of Liver Origin.Pharmacological reviews · 2023Review
- Leveraging unstructured data to identify hereditary angioedema patients in electronic medical records.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2021Article
- Identification and Validation of Hemophilia-Related Outcomes on Japanese Electronic Medical Record Database (Hemophilia-REAL V Study).Journal of blood medicine · 2021Article
- Augmenting the Clinical Data Sources for Enigmatic Diseases: A Cross-Sectional Study of Self-Tracking Data and Clinical Documentation in Endometriosis.Applied clinical informatics · 2020Observational
- Patient and Caregiver Preferences for Long-Term Prophylactic Treatment of Bleeds in Haemophilia: A Discrete-Choice Experiment.Haemophilia : the official journal of the World Federation of HemophiliaArticle
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundElectronic health records (EHRs) are an important source of information with regard to diagnosis and treatment of rare health conditions, such as congenital hemophilia, a bleeding disorder characterized by deficiency of factor VIII (FVIII) or factor IX (FIX).
objectiveTo identify patients with congenital hemophilia using EHRs.
designAn EHR database study.
settingEHRs were accessed from Humedica between January 1, 2007, and July 31, 2013. PATIENTS: Selection criteria were applied for an initial ICD-9-CM diagnosis of 286.0 (hemophilia A) or 286.1 (hemophilia B), and confirmation of records 6 months before and 12 months after the first diagnosis. Additional selection criteria included mention of "hemophilia" and "blood" or "bleed" within physician notes identified via natural language processing.
resultsA total of 129 males and 35 females were identified as the analysis population. Of those patients for whom both prothrombin time and activated partial thromboplastin time test results were available, only 56% of males and 7% of females exhibited a pattern of test results consistent with congenital hemophilia (normal prothrombin time and prolonged activated partial thromboplastin time). Few patients had a prescription for a hemophilia treatment; males most commonly received Amicar (10.8%) or FVIII (9.0%), whereas females most commonly received DDAVP (11.0%). The most identifiable sites of pain were the chest and the abdomen; 41% of males and 37% of females had joint pain. To evaluate whether patients had been correctly identified with congenital hemophilia, EHRs of 6 patients were reviewed; detailed assessment of their data was found to be inconsistent with a conclusive diagnosis of congenital hemophilia. LIMITATIONS: Inconsistent coding practices may affect data integrity.
conclusionA potentially high number of false positive identifications, particularly among female patients, suggests that ICD-9-CM coding alone may be insufficient to identify patient cohorts. In-depth reviews and multimodal analysis of chart notes may improve data integrity.
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