The Pediatric Cardiac Care Consortium–Revisited

Moller, James H.; Powell, Christine B.; Joransen, James A.; Borbas, Catherine

doi:10.1016/s1070-3241(16)30115-8

Cited by 24 publications

(22 citation statements)

References 7 publications

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“…Furthermore, the ongoing debate related to the number of operations needed in one surgical centre to achieve high quality has resulted in detailed classification systems allowing comparisons between different centres 6, 7. We did not use this detailed classification system in the present population‐based study, but the distribution of the various lesions in the material confirms that there is no skewing of case severity 8.…”

Section: Discussionmentioning

confidence: 84%

Survival after surgery for congenital heart defects: Does reduced early mortality predict improved long‐term survival?

Eskedal

Hagemo

Eskild³

et al. 2005

Acta Paediatrica

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Section: Discussionmentioning

confidence: 84%

Survival after surgery for congenital heart defects: Does reduced early mortality predict improved long‐term survival?

Eskedal

Hagemo

Eskild³

et al. 2005

Acta Paediatrica

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“…Between 1982 and 2008, the PCCC collected data on over 137,000 patients, 118,000 operations, and 123,000 cardiac catheterizations [13]. This retrospective review included patients from the US and Canada who were enrolled in the PCCC from 1982 to 2008 with a diagnosis code for T13 or T18 (including mosaic forms) and CHD.…”

Section: Methodsmentioning

confidence: 99%

Long-Term Outcomes of Children With Trisomy 13 and 18 After Congenital Heart Disease Interventions

Peterson

Kochilas

Catton

et al. 2017

The Annals of Thoracic Surgery

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Background The purpose of this study is to report short and long term outcomes following congenital heart defect (CHD) interventions in patients with Trisomy 13 or 18. Methods A retrospective review of the Pediatric Cardiac Care Consortium (PCCC) identified children with Trisomy 13 or 18 with interventions for CHD between 1982 and 2008. Long term survival and cause of death was obtained through linkage with the National Death Index. Results A total of 50 patients with Trisomy 13 and 121 with Trisomy 18 were enrolled in PCCC between 1982 and 2008; among them 29 patients with Trisomy 13 and 69 patients with Trisomy 18 underwent intervention for CHD. In-hospital mortality for patients with Trisomy 13 or Trisomy 18 was 27.6% and 13%, respectively. Causes of in-hospital mortality were primarily cardiac (64.7%) or multiple organ system failure (17.6%). National Death Index linkage confirmed 23 post-discharge deaths. Median survival (conditioned to hospital discharge) was 14.8 years (95% CI 12.3–25.6 years) for patients with Trisomy 13 and 16.2 years (95% CI 12–20.4 years) for patients with Trisomy 18. Causes of late death included cardiac (43.5%), respiratory (26.1%), and pulmonary hypertension (13%). Conclusions In-hospital mortality for all surgical risk categories was higher in patients with Trisomy 13 or 18 than reported for the general population. However, patients with Trisomy 13 or 18, who were selected as acceptable candidates for cardiac intervention and who survived CHD intervention, demonstrated longer survival than previously reported. These findings can be used to counsel families and make program-level decisions on offering intervention to carefully selected patients.

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“…Each record is entered in duplicate at the PCCC office. The hierarchy of lesions is considered as previously reported by Moller et al [12]. The data are entered into a MUMPS® relational database that is then queried to obtain deidentified results that are exported to an Excel® spreadsheet for further analysis.…”

Section: Methodsmentioning

confidence: 99%

Pediatric Cardiac Care Consortium: An Instrument for Evidence-Based Clinical Decision Support

Pyles

Hills

Larson

et al. 2009

J. of Cardiovasc. Trans. Res.

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Pediatric Cardiac Care Consortium is a registry of cardiac catheterizations, surgical operations, and autopsies performed for infants, children, and adults with congenital heart disease. Four examples of use of PCCC data to evaluate variability in morphology, management, and outcomes for the procedures are described. Consideration is given to the following clinical problems: (1) the experience with surgical heart block in operative closure of perimembranous VSD, (2) the transition away from atrial baffle operations to the arterial switch operation for simple transposition of the great arteries, (3) the experience of planned 3 stage palliation of hypoplastic left heart syndrome, and (4) the identification of a high risk combination of cardiovascular anomalies in Williams syndrome. Analysis of registry outcomes allows ongoing quality improvement at a cardiac center to consider not only its own experience but that of the overall group. The PCCC data can be used to personalize management of rare congenital cardiac anomalies and combinations of anomalies. The PCCC registry allows longitudinal consideration of issues such as staged repairs and incidence of unplanned reoperation. In future years, the PCCC can facilitate investigations into the etiology of congenital heart disease.

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The Pediatric Cardiac Care Consortium–Revisited

Cited by 24 publications

References 7 publications

Survival after surgery for congenital heart defects: Does reduced early mortality predict improved long‐term survival?

Survival after surgery for congenital heart defects: Does reduced early mortality predict improved long‐term survival?

Long-Term Outcomes of Children With Trisomy 13 and 18 After Congenital Heart Disease Interventions

Pediatric Cardiac Care Consortium: An Instrument for Evidence-Based Clinical Decision Support

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