title: In-Hospital Vital Status and Heart Transplants After Intervention for Congenital Heart Disease in the Pediatric Cardiac Care Consortium: Completeness of Ascertainment Using the National Death Index and United Network for Organ Sharing Datasets.
abstract: The long-term outcomes of patients undergoing interventions for congenital heart disease (CHD) remain largely unknown. We linked the Pediatric Cardiac Care Consortium (PCCC) with the National Death Index (NDI) and the United Network for Organ Sharing Dataset (UNOS) registries to study mortality and transplant occurring up to 32 years postintervention. The objective of the current analysis was to determine the sensitivity of this linkage in identifying patients who are known to have died or undergone heart transplant.
  
  
  
  We used direct identifiers from 59 324 subjects registered in the PCCC between 1982 and 2003 to test for completeness of case ascertainment of subjects with known vital and heart transplant status by linkage with the NDI and UNOS registries. Of the 4612 in-hospital deaths, 3873 were identified by the NDI as "true" matches for a sensitivity of 84.0% (95% CI, 82.9-85.0). There was no difference in sensitivity across 25 congenital cardiovascular conditions after adjustment for age, sex, race, presence of first name, death year, and residence at death. Of 455 known heart transplants in the PCCC, there were 408 matches in the UNOS registry, for a sensitivity of 89.7% (95% CI, 86.9-92.3). An additional 4851 deaths and 363 transplants that occurred outside the PCCC were identified through 2014.
  
  
  
  The linkage of the PCCC with the NDI and UNOS national registries is feasible with a satisfactory sensitivity. This linkage provides a conservative estimate of the long-term death and heart transplant events in this cohort.
authors: Department of Pediatrics, University of Minnesota, Minneapolis, MN spector@umn.edu.
authors: Logan G
authors: LG
authors: Spector
authors: Biostatistical Design and Analysis Center, University of Minnesota, Minneapolis, MN.
authors: Jeremiah S
authors: JS
authors: Menk
authors: Department of Pediatrics, University of Rochester, NY.
authors: Jeffrey M
authors: JM
authors: Vinocur
authors: Department of Pediatrics, Emory University School of Medicine and Children's Health Care of Atlanta, GA.
authors: Matthew E
authors: ME
authors: Oster
authors: Department of Pediatrics, University of Minnesota, Minneapolis, MN.
authors: Brian A
authors: BA
authors: Harvey
authors: Department of Pediatric Surgery, University of Missouri-Kansas School of Medicine, Kansas City, MO.
authors: James D
authors: JD
authors: St Louis
authors: Department of Pediatrics, University of Minnesota, Minneapolis, MN.
authors: James
authors: J
authors: Moller
authors: Department of Pediatrics, Emory University School of Medicine and Children's Health Care of Atlanta, GA.
authors: Lazaros K
authors: LK
authors: Kochilas
mesh_terms: D002675:Child, Preschool; D016208:Databases, Factual; D005260:Female; D006330:Heart Defects, Congenital / Q000401:mortality / Q000601:surgery*; D016027:Heart Transplantation / Q000401:mortality / Q000706:statistics & numerical data*; D017052:Hospital Mortality; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D016247:Information Storage and Retrieval; D016015:Logistic Models; D008297:Male; D016017:Odds Ratio; D012042:Registries
keywords: cohort study; congenital heart disease; mortality; sensitivity and specificity; transplant