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Verification of Heart Disease: Implications for a New Heart Transplantation Allocation System
Pejman Raeisi-Giglou1, E Rene Rodriguez2, Eugene H Blackstone3
1Department of Internal Medicine, Cleveland Clinic, Cleveland, Ohio.
Insights
Heart transplant diagnoses show high accuracy, but rare diseases like sarcoidosis need better classification. Improving the United Network for Organ Sharing database requires post-transplant pathology reports.
Area of Science:
- Cardiology
- Transplantation Medicine
- Medical Informatics
Background:
- Heart disease type impacts heart transplantation waitlist survival.
- A new allocation system will incorporate specific heart disease types.
- Accuracy of pre-transplant clinical diagnosis and misclassification effects are currently unknown.
Purpose of the Study:
- To assess the accuracy of pre-transplant clinical heart disease diagnoses in the United Network for Organ Sharing (UNOS) database.
- To evaluate the impact of diagnostic misclassifications on a proposed heart transplant allocation system.
Main Methods:
- Retrospective analysis of 334 adult heart transplant recipients (2009-2015).
- Comparison of pre-transplant clinical diagnosis with explanted heart pathology.
- Assessment of misclassification effects on the new allocation system.
Main Results:
- 82% concordance between clinical diagnosis and explanted heart pathology.
- 18% discordance, including 10% coding errors and 8% incorrect diagnoses.
- Sarcoidosis and congenital heart disease (CHD) were potentially disadvantaged by the new allocation system.
Conclusions:
- High concordance exists between clinical and pathological diagnoses, with exceptions for sarcoidosis and genetic diseases.
- Few misclassifications negatively impact patients under the new allocation system.
- Post-transplant pathology reporting is recommended to improve UNOS database accuracy and outcome research.
Objectives:
This study sought to determine the accuracy of the pre-transplantation clinical diagnosis of heart disease in the United Network for Organ Sharing (UNOS) database.
Background:
Because survival on the heart transplantation waitlist depends on underlying heart disease, a new allocation system will include the type of heart disease. Accuracy of the pre-transplantation clinical diagnosis and the effect of misclassification are unknown.
Methods:
We included all adults who received transplants at our center between January 2009 to December 2015. We compared the pre-transplantation clinical diagnosis at listing with pathology of the explanted heart and determined the potential effect of misclassification with the proposed allocation system.
Results:
A total of 334 patients had the following clinical cardiac diagnoses at listing: 148 had dilated cardiomyopathy, 19 had restrictive cardiomyopathy, 103 had ischemic cardiomyopathy, 24 had hypertrophic cardiomyopathy, 11 had valvular disease, 16 had congenital heart disease (CHD), and 13 patients had a diagnosis of "other." Pathology of the explanted hearts revealed 82% concordance and 18% discordance (10% coding errors and 8% incorrect diagnosis). The most common incorrect diagnoses were sarcoidosis (66%), arrhythmogenic right ventricular dysplasia (60%), and other causes of predominately right-sided heart failure (33%). Among the misclassified diagnoses, 40% were listed as UNOS status 2, 8% remained at status 2 at transplantation, and only sarcoidosis and CHD were potentially at a disadvantage with the new allocation.
Conclusions:
There is high concordance between clinical and pathologic diagnosis, except for sarcoidosis and genetic diseases. Few misclassifications result in disadvantages to patients based on the new allocation system, but rare diseases like sarcoidosis remain problematic. To improve the UNOS database and enhance outcome research, pathology of the explanted hearts should be required post-transplantation.
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