Grown-up congenital heart disease care throughout Europe

Transcription

1 Grown-up congenital heart disease care throughout Europe P. Moons, F. Meijboom, H. Baumgartner, P.T. Trindade, E. Huyghe, H. Kaemmerer on behalf of the ESC Working Group on Grown-up Congenital Heart Disease

2 Europe: 730 million inhabitants 4.2 million patients with congenital heart disease 2.3 million adults with congenital heart disease Extrapolated from Marelli et al., 2007

3 Introduction Importance of specific adult congenital heart disease (ACHD) programmes

4 Recommendations Introduction One centre per 5-10 million inhabitants Deanfield et al., 2003 Landzberg et al., 2001 One centre per 2 million inhabitants Marelli et al., ACHD programmes in Europe

5 Aim of the study To assess the structure and activities of ACHD programmes in Europe Staffing Clinical activities Available equipment Training Supportive services

6 Methods Design: descriptive, cross-sectional survey of specialised ACHD centres in Europe Study population: 56 ACHD centres identified through Working Group on GUCH of ESC 14 ACHD centres added after suggestions by participants

7 Measurement: Methods 53-item instrument devised for this survey (based on survey form previously used by WG on GUCH ) 15 minutes to complete

8 Results: Sample 53/70 ACHD programmes (76%) participated Specialist centres: Paediatric cardiology or congenital cardiac surgery At least one ACHD cardiologist on staff >200 patients in active follow-up 50 specialist centres included in analyses

9 Results: Sample 50 specialist centres from 18 countries Czech Republic; 1 Austria; 1 Israel; 2 Portugal; 1 Lithuania; 1 Ireland; 1 Romania; 1 Slovenia; 1 UK; 9 The Netherlands; 2 Germany; 5 Spain; 3 Poland; 3 France; 2 Sweden; 5 Italy; 4 Switzerland; 4 Belgium; 4

10 Number of programmes established per year Cumulative number of programmes established Results: Sample Number of programmes established per year Cumulative number of programmes established

11 Results: Staffing ACHD cardiologists Paediatric cardiologists ACHD surgeons Nurse specialists Number of centres with this professional Number of professionals Median (Q1-Q3) 94% 2 (2-3) 86% 2 (1-4) 86% 2 (1-2.75) 68% 1 (0-2)

12 Results: Clinical activity Median (Q1-Q3) # ACHD patients in active follow-up 1,500 (800-2,900) # outpatient clinic days/week 4 (2-5) # patients/week 26 (15-45) # hours/week spent on ACHD care by ACHD cardiologists # ACHD patients seen at the outpatient clinic/year 30 ( ) 800 (480-1,314)

13 Results: Clinical activity (cont.) Median (Q1-Q3) # hospital admissions/year 130 ( ) # diagnostic catheter procedures/year 31 ( ) # interventional catheter procedures/ year 45 (19-84) # cardiosurgical procedures/year 35 (14-55) % perioperative mortality 1 (0-2.5)

14 Results: Clinical activity (cont.)

15 Results: Equipment n (%) Cardiac catheterisation 50 (100%) Electrophysiology 49 (98%) Magnetic resonance imaging 48 (96%) Computer tomography 50 (100%) Nuclear cardiology 46 (92%)

16 Results: Training n (%) Med (Q1-Q3) ever formally trained fellows in ACHD? 17 (34%) 2.5 (2-7.75) adult cardiologists/int. med. doctors 17 (34%) paediatric cardiologists 14 (28%) residents 30 (60%) medical students 16 (32%) visiting physicians 13 (26%)

17 Results: Supportive services n (%) Obstetrics 42 (84%) Contraceptive services 41 (82%) Cardiac anaesthesia 49 (98%) Heart transplantation 29 (58%) Lung transplantation 18 (36%) Genetics 40 (80%) Cardiac rehabilitation 39 (78%) Psychosocial counselling/social work 43 (86%)

18 Discussion First study that comprehensively assess the structure and activities of specialised ACHD programmes in Europe Provide a basis for benchmarking Can assist to optimise efficiency or balance workload for ACHD healthcare providers

19 Discussion Data pertained to 71% of all ACHD centres identified in Europe Have 100,000 patients in active follow-up All centres are estimated to have 130,000 patients in follow-up 7.1% of all ACHD patients are currently receiving specialised ACHD care

20 Discussion: Limitations Data pertain to The situation to date may be different. Data on clinical activities are mainly estimations. Few centres could provide accurate data No a priori definitions were given Structure: does not allow to draw conclusion on processes or outcomes

21 Conclusions Only 7.1% of all European ACHD patients are in follow-up in a specialised ACHD programme Equal staffing and equipement Wide variety in clinical activity, training, and supportive services Per ACHD outpatient visits/year, 1 full-time ACHD cardiologist is required (for outpatient; inpatient; catheterisations) an estimated 700 ACHD cardiologists are needed in Europe

22 Conclusions: Avenues for the future To establish formal training for ACHD cardiologists To increase the number of ACHD programmes To take sufficient nurse specialists on staff To reduce unnecessary variability in time spent on ACHD care

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