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

Abstract

Objectives To analyse simple national statistics and survival data collected in the central cardiac audit database after treatment for congenital heart disease and to provide long term comparative statistics for each contributing centre. Design Prospective, longitudinal, observational, national cohort survival study.

An attempt at data verification in the EACTS Congenital Database☆

“…CHOP, Pennsylvania). There are important differences between various verification protocols used for medical data sets [15]. The verified samples vary from as small as 10 up to 100%.…”

“…The reliability of any data collection remains the key issue when the information is used for further outcome analysis and comparison. That is why data completeness and accuracy is essential, although it remains one of the major challenges for database management [4,12,14,15].…”

“…These initial efforts provided the impetus for further cooperation between Congenital Heart Surgeons from both continents and initiated the International Congenital Heart Surgery Nomenclature and Database Project [11,12,13,15,16].…”

The next challenge?adapting to change

“…The UK results for 2000-2001 were recently reported in the British Medical Journal [17], and it was alarming to find that despite each unit trying hard to enter all their data, 22% of early deaths were missed initially. Of these 45% were patients who had left hospital but died within 30 days and the death was picked up by the Office of National Statistics.…”

Quality evaluation in congenital heart surgery

“…A recent publication from J.L. Gibbs et al in the British Medical Journal[7], reporting the results from the national congenital database of the United Kingdom, shows that "Volunteered survival data are of little value, sometimes overestimating survival as much as 20%…,42 of the 194 deaths within 30 days were detected by central tracking but were not in the volunteered data". This observation is stunning and very much in favor of independently verifying data in congenital databases.…”