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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

View Article: PubMed Central - PubMed

ABSTRACT

Background: 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.

Methods and results: 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.

Conclusions: 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.

No MeSH data available.


Related in: MedlinePlus

Tree plot of odds ratios for each factor in the multivariable logistic regression model with the outcome, successful match with the NDI (A: Age at death, sex, race, and availability of first name; B: Primary diagnosis; C: Year of death; D: Residence at death). AS/subAS indicates aortic stenosis/subaortic stenosis; ASD, atrial septal defect; CCAA, congenital coronary artery anomalies; CCAVC, complete common atrioventricular canal; ccTGA, congenitally corrected transposition of great arteries; CoA, coarctation of aorta; Cor‐Triart, cor triatriatum; DORV, double outlet right ventricle; dTGA, dextro‐transposition of great arteries; IAA, interrupted aortic arch; MR, mitral regurgitation; MS/supra MV ring, mitral stenosis/supra‐mitral valve ring; NDI, National Death Index; PA/IVS, pulmonary atresia/intact ventricular septum; PAA, pulmonary artery atresia; PAPVR, partial anomalous pulmonary venous return; PAVC/TAVC, partial atrioventricular canal/transitional atrioventricular canal; PDA, patent ductus arteriosus; PS/subPS, pulmonary stenosis/subpulmonary stenosis; Supra AS, supra aortic stenosis; TAC, transverse aortic constriction; TAPVR, total anomalous pulmonary venous return; TOF, tetralogy of fallot; TVA, tricuspid valve atresia; UVH, univentricular heart; VSD, ventricular septal defect.
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jah31696-fig-0002: Tree plot of odds ratios for each factor in the multivariable logistic regression model with the outcome, successful match with the NDI (A: Age at death, sex, race, and availability of first name; B: Primary diagnosis; C: Year of death; D: Residence at death). AS/subAS indicates aortic stenosis/subaortic stenosis; ASD, atrial septal defect; CCAA, congenital coronary artery anomalies; CCAVC, complete common atrioventricular canal; ccTGA, congenitally corrected transposition of great arteries; CoA, coarctation of aorta; Cor‐Triart, cor triatriatum; DORV, double outlet right ventricle; dTGA, dextro‐transposition of great arteries; IAA, interrupted aortic arch; MR, mitral regurgitation; MS/supra MV ring, mitral stenosis/supra‐mitral valve ring; NDI, National Death Index; PA/IVS, pulmonary atresia/intact ventricular septum; PAA, pulmonary artery atresia; PAPVR, partial anomalous pulmonary venous return; PAVC/TAVC, partial atrioventricular canal/transitional atrioventricular canal; PDA, patent ductus arteriosus; PS/subPS, pulmonary stenosis/subpulmonary stenosis; Supra AS, supra aortic stenosis; TAC, transverse aortic constriction; TAPVR, total anomalous pulmonary venous return; TOF, tetralogy of fallot; TVA, tricuspid valve atresia; UVH, univentricular heart; VSD, ventricular septal defect.

Mentions: The results of the multivariable analysis of matches with the NDI are shown graphically in Figure 2 and presented in full in Table 2. Odds Ratios (ORs) represent the ratio of the odds of a match with the NDI. Overall tests of association were significant for year of death (P=0.010), age at death (P<0.001), residence at death (P<0.001), availability of first name (P<0.001), and race (P<0.001). Sex (P=0.116) and diagnosis group (P=0.294) were not significantly associated with match success.


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
Tree plot of odds ratios for each factor in the multivariable logistic regression model with the outcome, successful match with the NDI (A: Age at death, sex, race, and availability of first name; B: Primary diagnosis; C: Year of death; D: Residence at death). AS/subAS indicates aortic stenosis/subaortic stenosis; ASD, atrial septal defect; CCAA, congenital coronary artery anomalies; CCAVC, complete common atrioventricular canal; ccTGA, congenitally corrected transposition of great arteries; CoA, coarctation of aorta; Cor‐Triart, cor triatriatum; DORV, double outlet right ventricle; dTGA, dextro‐transposition of great arteries; IAA, interrupted aortic arch; MR, mitral regurgitation; MS/supra MV ring, mitral stenosis/supra‐mitral valve ring; NDI, National Death Index; PA/IVS, pulmonary atresia/intact ventricular septum; PAA, pulmonary artery atresia; PAPVR, partial anomalous pulmonary venous return; PAVC/TAVC, partial atrioventricular canal/transitional atrioventricular canal; PDA, patent ductus arteriosus; PS/subPS, pulmonary stenosis/subpulmonary stenosis; Supra AS, supra aortic stenosis; TAC, transverse aortic constriction; TAPVR, total anomalous pulmonary venous return; TOF, tetralogy of fallot; TVA, tricuspid valve atresia; UVH, univentricular heart; VSD, ventricular septal defect.
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jah31696-fig-0002: Tree plot of odds ratios for each factor in the multivariable logistic regression model with the outcome, successful match with the NDI (A: Age at death, sex, race, and availability of first name; B: Primary diagnosis; C: Year of death; D: Residence at death). AS/subAS indicates aortic stenosis/subaortic stenosis; ASD, atrial septal defect; CCAA, congenital coronary artery anomalies; CCAVC, complete common atrioventricular canal; ccTGA, congenitally corrected transposition of great arteries; CoA, coarctation of aorta; Cor‐Triart, cor triatriatum; DORV, double outlet right ventricle; dTGA, dextro‐transposition of great arteries; IAA, interrupted aortic arch; MR, mitral regurgitation; MS/supra MV ring, mitral stenosis/supra‐mitral valve ring; NDI, National Death Index; PA/IVS, pulmonary atresia/intact ventricular septum; PAA, pulmonary artery atresia; PAPVR, partial anomalous pulmonary venous return; PAVC/TAVC, partial atrioventricular canal/transitional atrioventricular canal; PDA, patent ductus arteriosus; PS/subPS, pulmonary stenosis/subpulmonary stenosis; Supra AS, supra aortic stenosis; TAC, transverse aortic constriction; TAPVR, total anomalous pulmonary venous return; TOF, tetralogy of fallot; TVA, tricuspid valve atresia; UVH, univentricular heart; VSD, ventricular septal defect.
Mentions: The results of the multivariable analysis of matches with the NDI are shown graphically in Figure 2 and presented in full in Table 2. Odds Ratios (ORs) represent the ratio of the odds of a match with the NDI. Overall tests of association were significant for year of death (P=0.010), age at death (P<0.001), residence at death (P<0.001), availability of first name (P<0.001), and race (P<0.001). Sex (P=0.116) and diagnosis group (P=0.294) were not significantly associated with match success.

View Article: PubMed Central - PubMed

ABSTRACT

Background: The long&#8208;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&nbsp;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.

Methods and results: We used direct identifiers from 59&nbsp;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&#8208;hospital deaths, 3873 were identified by the NDI as &ldquo;true&rdquo; matches for a sensitivity of 84.0% (95% CI, 82.9&ndash;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&ndash;92.3). An additional 4851 deaths and 363 transplants that occurred outside the PCCC were identified through 2014.

Conclusions: 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&#8208;term death and heart transplant events in this cohort.

No MeSH data available.


Related in: MedlinePlus