Staffing, activities, and infrastructure in 96 specialised adult congenital heart disease clinics in Europe
Introduction
The growing number of adults with congenital heart disease (CHD) has prompted the establishment of an adult congenital heart disease (ACHD) medical subspecialty, and dedicated ACHD programmes have been founded in many health institutions [1]. Numerous guidelines and recommendations have been published over the past two decades, with the aim of standardising and optimising care for ACHD patients throughout Europe and North America [[2], [3], [4], [5], [6], [7], [8], [9], [10], [11]]. Some of these guidelines have addressed the organisation of specialised care [[4], [5], [6], [7], [8],11]. The latest recommendations on this subject, released by the working group on Grown-up Congenital Heart Disease (GUCH) of the European Society of Cardiology (ESC) in 2014 [11], defined the staffing requirements for specialised ACHD centres (see Supplementary material online, Table S1). To date, it is still unclear to what extent these recommendations are being implemented in European ACHD centres.
The first such evaluation of specialised ACHD centres was conducted in 2003–2004 as part of the Euro Heart Survey on ACHD [12]. This survey included 48 specialist ACHD centres, which had a median of 500 outpatient clinic visits per year [12]. A few years later (2007–2008), a more extensive survey was conducted with 53 centres [13]. The median number of outpatients per year was 800 in that survey [13], suggesting an increase in caseload of 60% in only 4 years. Almost all centres (94%) had at least two ACHD cardiologists and two surgeons dedicated to ACHD surgery. Furthermore, 68% of the centres had a nurse specialist on staff.
Since the last survey was performed over 10 years ago and because the feasibility of the 2014 recommendations has not been assessed to date, a new evaluation of European ACHD centres is warranted. The aim of this study was to assess the current situation regarding the status of (i) staff resources and the number of patients in active follow-up; (ii) clinical activities; (iii) education offered to health professionals; and (iv) available support services.
Section snippets
Participating centres and procedure
We carried out a descriptive, cross-sectional, paper-based survey of specialised European ACHD centres. The content of the survey was similar to the 2007–2008 survey [13]. We used the previously used definition for specialised ACHD centres: (i) having on staff at least one cardiologist with ACHD certification or equivalent training and (ii) having at least 200 ACHD patients in active follow-up [13].
Through the ESC working group on GUCH, one or more ACHD representatives for each country were
Results
Out of the 152 questionnaires emailed, 104 were returned, producing a 68% response rate. After the data review, eight questionnaires were excluded, because they failed to fulfil our inclusion criteria for a specialist ACHD centre. Hence, data from 96 centres in 24 countries were analysed. The median age of the centres was 13.5 years (IQR: 9–21.3). Supplement material online, Fig. S1 shows the number of European specialist ACHD centres established per year, as well as the cumulative growth in
Discussion
The results of this study provide information on the structure and activities of European ACHD centres surveyed in 2016, updating and expanding on the findings of a similar study that analysed data on European ACHD centres for 2006 [13]. Since that study, expert-based recommendations and guidelines have been published on how to set up ACHD centres. The present study, therefore, aimed to summarise the current staffing, infrastructure, and activities of ACHD centres in Europe and to discuss how
Limitations
Since the data reflected the status of ACHD specialist centres in 2016, some of the information presented here may already have changed by the publication date. In addition, although we were diligent in our efforts, we cannot assume that we identified all specialised ACHD centres in Europe. Furthermore, the data are self-reported, and verification was not possible. Therefore, our conclusions are based on estimates, albeit we believe reasonable ones. In addition, definitions for specific terms
Conclusion
The present findings showed that only 4% of the ACHD centres in Europe are organised strictly according to the latest recommendations, while the majority of ACHD patients are seen in centres with incomplete or missing non-medical staff. This means either ACHD care in Europe is still not optimally organised or that the current recommendations are not yet fully implemented in clinical practice. The next step to improve ACHD care according to recommendation papers is to integrate or expand their
Declaration of interest
None.
Financial disclosure
None.
Acknowledgments
This work has been supported by the ESC Working Group on Grown-Up Congenital Heart Disease. We thank all participating centres who contributed to this study.
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These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.