Differential Case Ascertainment in Clinical Registry Versus Administrative Data and Impact on Outcomes Assessment for Pediatric Cardiac Operations
a Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina
b Department of Medicine, Duke University School of Medicine, Durham, North Carolina
c Duke Clinical Research Institute, Durham, North Carolina
d Department of Surgery, University of South Florida, All Children's Hospital, St. Petersburg, Florida
e Department of Pediatric and Congenital Heart Surgery, Cleveland Clinic, Cleveland, Ohio
f Department of Surgery, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
g Department of Cardiac Surgery, University of Michigan Medical School, Ann Arbor, Michigan
h Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio
i Department of Cardiovascular Surgery, Children's Hospital Boston, Boston, Massachusetts
* Address correspondence to Dr Pasquali, C.S. Mott Children's Hospital, 1540 E Hospital Dr, Ann Arbor, MI 48105 (Email: firstname.lastname@example.org).
Background: Administrative datasets are often used to assess outcomes and quality of pediatric cardiac programs; however their accuracy regarding case ascertainment is unclear. We linked patient data (2004–2010) from the Society of Thoracic Surgeons Congenital Heart Surgery (STS-CHS) Dat abase (clinical registry) and the Pediatric Health Information Systems (PHIS) dat abase (administrative database) from hospitals participating in both to evaluate differential coding/classification of operations between datasets and subsequent impact on outcomes assessment.
Methods: Eight individual benchmark operations and the Risk Adjustment in Congenital Heart Surgery, version 1 (RACHS-1) categories were evaluated. The primary outcome was in-hospital mortality.
Results: The cohort included 59,820 patients from 33 centers. There was a greater than 10% difference in the number of cases identified between data sources for half of the benchmark operations. The negative predictive value (NPV) of the administrative (versus clinical) data was high (98.8%–99.9%); the positive predictive value (PPV) was lower (56.7%–88.0%). Overall agreement between data sources in RACHS-1 category assignment was 68.4%. These differences translated into significant differences in outcomes assessment, ranging from an underestimation of mortality associated with truncus arteriosus repair by 25.7% in the administrative versus clinical data (7.01% versus 9.43%; p = 0.001) to an overestimation of mortality associated with ventricular septal defect (VSD) repair by 31.0% (0.78% versus 0.60%; p = 0.1). For the RACHS-1 categories, these ranged from an underestimation of category 5 mortality by 40.5% to an overestimation of category 2 mortality by 12.1%; these differences were not statistically significant.
Conclusions: This study demonstrates differences in case ascertainment between administrative and clinical registry data for children undergoing cardiac operations, which translated into important differences in outcomes assessment.
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