Report of the Coding Committee of the Association for European Paediatric Cardiology

Abstract

For many years, paediatric cardiologists and paediatric cardiac surgeons have felt the need for a common diagnostic and therapeutic coding system with which to classify patients of all ages with congenital and acquired heart disease. This desire has been highlighted by the recent, and ongoing, enquiry into the outcome of paediatric cardiac surgery at the unit in Bristol, in the United Kingdom, and the resulting obligation to provide national and international comparisons of surgical results between centres caring for these patients. In order to incorporate effective clinical governance and best practice into our speciality, a method is required to gather accurate and validated data on the diagnosis, therapy and outcome of patients with heart disease from prenatal life through to adulthood. This would facilitate comparisons between individual units which fully take into account the mix of cases involved, and thus attempt to focus on the relevant and genuine factors underlying the differing outcomes in terms of both mortality and morbidity. For this to be achieved, it is essential to have a comprehensive system of coding and classification, using mutually exclusive and unambivalent terms. The system must be both easy to use, and fulfil the needs and expectations of widely different cultures of practice. Although many centres have developed their own system of internal audit, with their own coding system, and some co-operation has taken place between centres nationally and across international boundaries within Europe by the European Congenital Heart Surgeons Federation (see below), a cohesive, and comprehensive system suitable for setting standards has yet to emerge. Historically, this has partly been due to the lack of recognition by governments of the importance of such a process, with underfunding of initiatives aimed at addressing these issues, both technologically and in terms of human resources.

Survival after surgery or therapeutic catheterisation for congenital heart disease in children in the United Kingdom: analysis of the central cardiac audit database for 2000-1

“…Several groups have devised coding systems for congenital heart disease 3 6 7. The central cardiac audit database plans to adopt the coding system of the Association for European Paediatric Cardiology7 from 2004, to facilitate future international compatibility of data.…”

The emerging burden of hospital admissions of adults with congenital heart disease

“…From November 2001, patients with congenital heart disease aged 18 years or older have been recruited through the treating cardiologist or via response to advertisements in local media, and included by three independent, permanently employed research nurses. Clinical data such as diagnosis, clinical events and procedures—classified using the European Paediatric Cardiac Code Short List coding scheme13—as well as patient and family history were obtained from medical records. In case of multiple diagnoses in one patient, a pre-specified hierarchical scheme based on consensus-based classification of severity of diagnoses3 was used, by means of which the diagnosis with the worst prognosis was established as the main diagnosis.…”

Surgery in Adults With Congenital Heart Disease

“…From November 2001, patients with congenital heart disease Ն18 years of age (childhood survivors) were recruited and included by 3 independent, permanently employed research nurses through the treating cardiologist or via response to advertisements in local media. Clinical data such as demographics, diagnosis, clinical events, and procedures (classified by use of the European Pediatric Cardiac Code Short List coding scheme 20 ), as well as patient and family history, were obtained from medical records. In case of multiple diagnoses in 1 patient, a prespecified hierarchical scheme founded on consensusbased classification of defect severity 21 was used, by means of which the diagnosis with the worst prognosis was established as the main diagnosis.…”