Survival after surgery or therapeutic catheterisation for congenital heart disease in children in the United Kingdom: analysis of the centra
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《英国医生杂志》
1 Central Cardiac Audit Database, Department of Paediatric Cardiology, Leeds General Infirmary, Calverley, Leeds LS1 3EX jgibbs@boltblue.com, 2 Society of Cardiothoracic Surgeons of England and Ireland, Southampton General Hospital, Southampton SO16 6YD, 3 Central Cardiac Audit Database, Royal Brompton Hospital, London SW3 6NP
Correspondence to: J Gibbs jgibbs@boltblue.com
Abstract
Monitoring of survival rates after cardiac surgery was introduced in the United Kingdom in 1977 with voluntary submission of data to the Society of Cardiothoracic Surgeons of Great Britain and Ireland. The central cardiac audit database was established by the British Cardiac Society, the Society of Cardiothoracic Surgeons, and the British Paediatric Cardiac Association to provide national analysis of outcomes of cardiac surgery and therapeutic cardiac catheterisation. It differs in three major aspects from previous national audit projects: data are collected electronically in a secure format; mortality and reintervention are tracked centrally by using a unique patient identifier (the NHS number); and independent data validation is used. In 2000 the Department of Health funded the central cardiac audit database to collate data from all centres for congenital heart disease in the United Kingdom. This report contains the first year's data (1 April 2000 to 31 March 2001), with centrally tracked one year survival. The results are presented on behalf of the Society of Cardiothoracic Surgeons, the British Paediatric Cardiac Association, and all contributing centres, each of which gave consent to publication of identifiable, centre specific data.
Methods
Data collection and quality
Overall completeness of the dataset was 96.8%, with completeness for individual data fields ranging from 75% (for NHS number) to 100%. Data were received for a total of 5494 procedures, of which 3666 were surgical and 1828 were therapeutic catheterisations.
We have reported all cause mortality, choosing not to attempt detailed investigation of cause of death and its relation to treatment. We found substantial differences in volunteered and centrally tracked mortality, with seven of 11 centres in England under-reporting death within 30 days. Central tracking of mortality identified 469 deaths, 194 occurring within 30 days and 275 later. Forty two of the 194 deaths within 30 days were detected by central tracking but were not in the volunteered data. Nineteen of these patients were discharged alive but subsequently died within 30 days of the operation. The remainder had been incorrectly coded as alive at discharge; using reported discharge status would have underestimated 30 day mortality by 22%. Data on hospital episode statistics were available for 2716 patients and under-reported death within 30 days by 9%, classifying 1% of surviving patients as deceased. Hospital episode statistics data also under-reported the total number of procedures by 10%. During validation visits we found a total of 143 procedures to be missing from the data submissions to the central cardiac audit database, predominantly related to systematic errors in data collection. The visits resulted in submission of missing or revised data from all of the 13 centres.
Survival
Figures 1, 2, 3 show national survival curves after cardiopulmonary bypass surgery, non-cardiopulmonary bypass surgery or therapeutic catheterisation. The table shows survival at 30 days and one year after all procedures. We assessed benchmark procedure survival anonymously for individual operators (41 surgeons and 63 cardiologists) as well as for different centres. No significant difference from the national mean survival was detectable for any individual. Figures 4 and 5 and figures A-I (see bmj.com), respectively, show individual centre's survival data for pooled and individual benchmark procedures.
Fig 1 One year survival after cardiopulmonary bypass surgery for age groups <1 month, 1 month-1 year, and 1-16 years for the United Kingdom
Fig 2 One year survival for non cardiopulmonary bypass surgery for age groups <1 month, 1 month-1 year, and 1-16 years for the United Kingdom
Fig 3 One year survival for therapeutic catheterisation for age groups <1 month, 1 month-1 year, and 1-16 years for the United Kingdom
Fig 4 Survival at 30 days and at one year reported by individual centre, with 99% confidence intervals for all benchmark surgical procedures. The shaded areas represent the national means with 99% confidence intervals. If a centre's confidence intervals overlap the shaded area their survival does not differ statistically from the national mean. For a list of the abbreviations see bmj.com
Fig 5 Survival at 30 days and at one year reported by individual centre, with 99% confidence intervals for all benchmark catheter procedures. The shaded areas represent the national means with 99% confidence intervals. If a centre's confidence intervals overlap the shaded area their survival does not differ statistically from the national mean. For a list of the abbreviations see bmj.com
Discussion
Independent validation of data is essential for accurate survival analysis. One year survival statistics give a more realistic view of outcome than traditional perioperative mortality. At present survival is no different between any of the 13 UK tertiary centres for congenital heart disease, but confidence intervals are wide, limiting our power to detect underperformance from analysis of a single year's data. Appropriately resourced, focused, national audit is capable of accurate data collection on which nationwide, long term, quality control can be based.
The paper was written on behalf of the Society of Cardiothoracic Surgeons of Great Britain and Northern Ireland, the British Paediatric Cardiac Association, and the congenital heart disease units of Alder Hey Hospital, Liverpool; Birmingham Children's Hospital; Bristol Royal Hospital for Sick Children; Freeman Hospital, Newcastle; Glenfield Hospital, Leicester; Great Ormond Street Hospital, London; Guy's Hospital, London; John Radcliffe Hospital, Oxford; Leeds General Infirmary; Royal Brompton and Harefield NHS Trust, London; Royal Hospital for Sick Children, Glasgow; Royal Victoria Hospitals, Belfast; and Southampton General Hospital.
Contributors: JLG, DC, and AR initiated the study. DC analysed the data. JLG, JLM, and AR drafted the report. All four authors are guarantors on behalf of the 13 centres that contributed data.
Funding: The National Health Service Information Authority (NHSIA) funded the central data collection, data validation, and data analysis.
Competing interests: None declared.
Figures A-I and abbreviations are on bmj.com
References
Wilson EB. Probable inference, the law of succession, and statistical inference. J Am Stat Assoc 1927;22: 209-12.
Newcombe R. Two sided confidence intervals for the single proportion: a comparative evaluation of seven methods. Stat Med 1998;17: 857-72.
Mavroudis C, Jacobs JP. Congenital heart surgery nomenclature and database project: Overview and minimum dataset. Ann Thorac Surg 2000;69: S2-17.
Jenkins KJ, Gauvreau K, Newburger JW, Spray TL, Moller JH, Iezzoni LI. Consensus-based method for risk adjustment for surgery for congenital heart disease. J Thorac Cardiovasc Surg 2002;123: 110-18.
Gallivan S, Davis KB, Stark JF. Early identification of divergent performance in congenital cardiac surgery. Eur J Cardiothorac Surg 2001;20: 1214-9.
Lacour-Gayet F, Maruszewski B, Mavroudis C, Jacobs JP, Elliott MJ. Presentation of the international nomenclature for congenital heart surgery. The long way from nomenclature to collection of validated data at the EACTS. Eur J Cardiothorac Surg 2000;18: 128-35.
Franklin RC, Anderson RH, Daniels O, Elliott M, Gewillig MH, Ghisla R, et al. Report of the coding committee of the Association for European Paediatric Cardiology. Cardiol Young. 2000;10(suppl 1): 1-26.
Nieminen HP, Jokinen EV, Sairanen HI. Late results of pediatric cardiac surgery in Finland: a population-based study with 96% follow-up. Circulation 2001;104: 570-5.
Stark J, Gallivan S, Lovegrove J, Hamilton JR, Monro JL, Pollock JC, et al. Mortality rates after surgery for congenital heart defects in children and surgeons' performance. Lancet 2000;355: 1004-7.
Aylin P, Alves B, Best N, Cook A, Elliott P, Evans SWJ, et al. Comparison of UK paediatric cardiac surgical performance by analysis of routinely collected data 1984-1996: was Bristol an outlier? Lancet 2001;358: 181-7.(John L Gibbs, lead clinic)
Correspondence to: J Gibbs jgibbs@boltblue.com
Abstract
Monitoring of survival rates after cardiac surgery was introduced in the United Kingdom in 1977 with voluntary submission of data to the Society of Cardiothoracic Surgeons of Great Britain and Ireland. The central cardiac audit database was established by the British Cardiac Society, the Society of Cardiothoracic Surgeons, and the British Paediatric Cardiac Association to provide national analysis of outcomes of cardiac surgery and therapeutic cardiac catheterisation. It differs in three major aspects from previous national audit projects: data are collected electronically in a secure format; mortality and reintervention are tracked centrally by using a unique patient identifier (the NHS number); and independent data validation is used. In 2000 the Department of Health funded the central cardiac audit database to collate data from all centres for congenital heart disease in the United Kingdom. This report contains the first year's data (1 April 2000 to 31 March 2001), with centrally tracked one year survival. The results are presented on behalf of the Society of Cardiothoracic Surgeons, the British Paediatric Cardiac Association, and all contributing centres, each of which gave consent to publication of identifiable, centre specific data.
Methods
Data collection and quality
Overall completeness of the dataset was 96.8%, with completeness for individual data fields ranging from 75% (for NHS number) to 100%. Data were received for a total of 5494 procedures, of which 3666 were surgical and 1828 were therapeutic catheterisations.
We have reported all cause mortality, choosing not to attempt detailed investigation of cause of death and its relation to treatment. We found substantial differences in volunteered and centrally tracked mortality, with seven of 11 centres in England under-reporting death within 30 days. Central tracking of mortality identified 469 deaths, 194 occurring within 30 days and 275 later. Forty two of the 194 deaths within 30 days were detected by central tracking but were not in the volunteered data. Nineteen of these patients were discharged alive but subsequently died within 30 days of the operation. The remainder had been incorrectly coded as alive at discharge; using reported discharge status would have underestimated 30 day mortality by 22%. Data on hospital episode statistics were available for 2716 patients and under-reported death within 30 days by 9%, classifying 1% of surviving patients as deceased. Hospital episode statistics data also under-reported the total number of procedures by 10%. During validation visits we found a total of 143 procedures to be missing from the data submissions to the central cardiac audit database, predominantly related to systematic errors in data collection. The visits resulted in submission of missing or revised data from all of the 13 centres.
Survival
Figures 1, 2, 3 show national survival curves after cardiopulmonary bypass surgery, non-cardiopulmonary bypass surgery or therapeutic catheterisation. The table shows survival at 30 days and one year after all procedures. We assessed benchmark procedure survival anonymously for individual operators (41 surgeons and 63 cardiologists) as well as for different centres. No significant difference from the national mean survival was detectable for any individual. Figures 4 and 5 and figures A-I (see bmj.com), respectively, show individual centre's survival data for pooled and individual benchmark procedures.
Fig 1 One year survival after cardiopulmonary bypass surgery for age groups <1 month, 1 month-1 year, and 1-16 years for the United Kingdom
Fig 2 One year survival for non cardiopulmonary bypass surgery for age groups <1 month, 1 month-1 year, and 1-16 years for the United Kingdom
Fig 3 One year survival for therapeutic catheterisation for age groups <1 month, 1 month-1 year, and 1-16 years for the United Kingdom
Fig 4 Survival at 30 days and at one year reported by individual centre, with 99% confidence intervals for all benchmark surgical procedures. The shaded areas represent the national means with 99% confidence intervals. If a centre's confidence intervals overlap the shaded area their survival does not differ statistically from the national mean. For a list of the abbreviations see bmj.com
Fig 5 Survival at 30 days and at one year reported by individual centre, with 99% confidence intervals for all benchmark catheter procedures. The shaded areas represent the national means with 99% confidence intervals. If a centre's confidence intervals overlap the shaded area their survival does not differ statistically from the national mean. For a list of the abbreviations see bmj.com
Discussion
Independent validation of data is essential for accurate survival analysis. One year survival statistics give a more realistic view of outcome than traditional perioperative mortality. At present survival is no different between any of the 13 UK tertiary centres for congenital heart disease, but confidence intervals are wide, limiting our power to detect underperformance from analysis of a single year's data. Appropriately resourced, focused, national audit is capable of accurate data collection on which nationwide, long term, quality control can be based.
The paper was written on behalf of the Society of Cardiothoracic Surgeons of Great Britain and Northern Ireland, the British Paediatric Cardiac Association, and the congenital heart disease units of Alder Hey Hospital, Liverpool; Birmingham Children's Hospital; Bristol Royal Hospital for Sick Children; Freeman Hospital, Newcastle; Glenfield Hospital, Leicester; Great Ormond Street Hospital, London; Guy's Hospital, London; John Radcliffe Hospital, Oxford; Leeds General Infirmary; Royal Brompton and Harefield NHS Trust, London; Royal Hospital for Sick Children, Glasgow; Royal Victoria Hospitals, Belfast; and Southampton General Hospital.
Contributors: JLG, DC, and AR initiated the study. DC analysed the data. JLG, JLM, and AR drafted the report. All four authors are guarantors on behalf of the 13 centres that contributed data.
Funding: The National Health Service Information Authority (NHSIA) funded the central data collection, data validation, and data analysis.
Competing interests: None declared.
Figures A-I and abbreviations are on bmj.com
References
Wilson EB. Probable inference, the law of succession, and statistical inference. J Am Stat Assoc 1927;22: 209-12.
Newcombe R. Two sided confidence intervals for the single proportion: a comparative evaluation of seven methods. Stat Med 1998;17: 857-72.
Mavroudis C, Jacobs JP. Congenital heart surgery nomenclature and database project: Overview and minimum dataset. Ann Thorac Surg 2000;69: S2-17.
Jenkins KJ, Gauvreau K, Newburger JW, Spray TL, Moller JH, Iezzoni LI. Consensus-based method for risk adjustment for surgery for congenital heart disease. J Thorac Cardiovasc Surg 2002;123: 110-18.
Gallivan S, Davis KB, Stark JF. Early identification of divergent performance in congenital cardiac surgery. Eur J Cardiothorac Surg 2001;20: 1214-9.
Lacour-Gayet F, Maruszewski B, Mavroudis C, Jacobs JP, Elliott MJ. Presentation of the international nomenclature for congenital heart surgery. The long way from nomenclature to collection of validated data at the EACTS. Eur J Cardiothorac Surg 2000;18: 128-35.
Franklin RC, Anderson RH, Daniels O, Elliott M, Gewillig MH, Ghisla R, et al. Report of the coding committee of the Association for European Paediatric Cardiology. Cardiol Young. 2000;10(suppl 1): 1-26.
Nieminen HP, Jokinen EV, Sairanen HI. Late results of pediatric cardiac surgery in Finland: a population-based study with 96% follow-up. Circulation 2001;104: 570-5.
Stark J, Gallivan S, Lovegrove J, Hamilton JR, Monro JL, Pollock JC, et al. Mortality rates after surgery for congenital heart defects in children and surgeons' performance. Lancet 2000;355: 1004-7.
Aylin P, Alves B, Best N, Cook A, Elliott P, Evans SWJ, et al. Comparison of UK paediatric cardiac surgical performance by analysis of routinely collected data 1984-1996: was Bristol an outlier? Lancet 2001;358: 181-7.(John L Gibbs, lead clinic)