title: The science of assessing the outcomes and improving the quality of the congenital and paediatric cardiac care.
abstract: OBJECTIVE
  Although significant progress has been made in the care of patients with paediatric and congenital cardiac disease, optimization of outcomes remains a constant goal. This review article will discuss the latest advances in the science of assessing the outcomes and improving the quality of the congenital and paediatric cardiac care, and will also review some of the latest associated research.
  
  
  RESULTS
  Important advances continue to be made in each of the following domains: standardized nomenclature; established uniform core dataset; evaluation of case complexity; verification of the completeness and accuracy of the data; collaboration between subspecialties; strategies for longitudinal follow-up; and incorporating quality improvement. In January 2015, the Society of Thoracic Surgeons Congenital Heart Surgery Database (STS-CHSD) will begin voluntary public reporting of programmatic congenital cardiac surgical outcomes using a new risk model that includes both procedural risk (as defined by the procedure itself and STAT Categories) and a number of patient-specific characteristics including age, weight, prior cardiothoracic operation, prematurity, chromosomal abnormalities, syndromes, noncardiac congenital anatomic abnormalities and preoperative factors. Clinical databases have been linked with administrative database to answer questions neither dataset can answer independently, providing new information about long-term mortality, rates of rehospitalization, long-term morbidity, comparative effectiveness of various treatments, and the cost of healthcare. Multiple research initiatives have recently been published using STS-CHSD.
  
  
  CONCLUSIONS
  The science of assessing the outcomes and improving the quality of congenital and paediatric cardiac care continues to evolve. Recent advances will facilitate the continued evolution of a meaningful method of multiinstitutional outcomes analysis for congenital and paediatric cardiac surgery.
authors.affiliation: aJohns Hopkins All Children's Heart Institute, All Children's Hospital and Florida Hospital for Children, Saint Petersburg, Tampa, and Orlando, Florida bDivision of Cardiac Surgery, Department of Surgery, Johns Hopkins University, Baltimore, Maryland, USA.
authors.forename: Jeffrey P
authors.initials: JP
authors.lastname: Jacobs
mesh_terms: D000367:Age Factors; D002300:Cardiac Care Facilities / Q000458:organization & administration; D006348:Cardiac Surgical Procedures / Q000379:methods* / Q000401:mortality; D002648:Child; D002675:Child, Preschool; D016208:Databases, Factual; D005069:Evaluation Studies as Topic; D005260:Female; D006330:Heart Defects, Congenital / Q000000981:diagnostic imaging / Q000401:mortality* / Q000601:surgery* / Q000628:therapy; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D017063:Outcome Assessment, Health Care; D010372:Pediatrics / Q000379:methods; D011182:Postoperative Care / Q000379:methods; D058996:Quality Improvement; D018570:Risk Assessment; D012955:Societies, Medical; D016019:Survival Analysis; D016896:Treatment Outcome; D014463:Ultrasonography; D014481:United States