Big Data in Transplantation Practice—the Devil Is in the Detail—Fontan-associated Liver Disease
| Autor: | S R Kumar, Michelle H Kim, John C. Bucuvalas, Ryan T. Fischer, Mary Lo, Earl F. Glynn, Ailene Nguyen, Juliet Emamaullee, Mark A. Hoffman |
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| Rok vydání: | 2020 |
| Předmět: |
Transplantation
medicine.medical_specialty education.field_of_study Heart disease business.industry medicine.medical_treatment Population 030230 surgery Liver transplantation medicine.disease Fontan procedure 03 medical and health sciences Liver disease surgical procedures operative 0302 clinical medicine Epidemiology medicine 030211 gastroenterology & hepatology Diagnosis code Intensive care medicine education business |
| Zdroj: | Transplantation. 105:18-22 |
| ISSN: | 0041-1337 |
| DOI: | 10.1097/tp.0000000000003308 |
| Popis: | Background As a result of the Fontan procedure, the prognosis of congenital single-ventricle heart disease has improved, with many affected children surviving into adulthood. However, the unanticipated consequences of chronic exposure to Fontan hemodynamics has revealed a new set of secondary noncardiac complications. Fontan-associated liver disease (FALD) is characterized by progressive hepatic fibrosis in nearly all patients post-Fontan, with the potential to develop cirrhosis, hepatocellular carcinoma, and the need for liver transplantation. A lack of data regarding FALD-related prognosis makes consideration of indications for and timing of heart alone versus combined heart-liver transplantation challenging. Methods A multidisciplinary group within the American Society for Transplantation analyzed several administrative datasets in order to study the epidemiology of FALD. Results This approach presented several obstacles, and efforts to characterize FALD were limited by a lack of Fontan- and FALD-specific diagnostic codes and an inability to follow individual patients through multiple health systems. Several ongoing Fontan registries were also reviewed but these do not adequately capture FALD-related variables. Such barriers highlight the need for large-scale data collection in patients post-Fontan to better understand and care for this complex population. Conclusions This study emphasizes the challenges of studying emerging transplant-related diagnoses in existing datasets and the need for mechanisms to adapt registries to appropriately identify patients with rare or emerging conditions. |
| Databáze: | OpenAIRE |
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