Elsevier

International Journal of Cardiology

Volume 292, 1 October 2019, Pages 100-105
International Journal of Cardiology

Staffing, activities, and infrastructure in 96 specialised adult congenital heart disease clinics in Europe

https://doi.org/10.1016/j.ijcard.2019.04.077Get rights and content

Highlights

  • Overview of the structure and staffing of ACHD centres in Europe.

  • Steady increase in the number of centres but not in patient numbers per centre.

  • High variability within centres between patient load and staff resources.

  • Poor adherence in staff resources to the current recommendations.

Abstract

Background

Clinical guidelines emphasise the need for specialised adult congenital heart disease (ACHD) programmes. In 2014, the working group on Grown-up Congenital Heart Disease of the European Society of Cardiology (ESC) published recommendations on the organisation of specialised care for ACHD. To appraise the extent to which these recommendations were being implemented throughout Europe, we assessed the number of patients in active follow-up and available staff resources in European ACHD programmes.

Methods

We conducted a descriptive, cross-sectional, paper-based survey of specialised ACHD centres in Europe in late 2017 concerning their centre status in 2016. Data from 96 ACHD centres were analysed. We categorised ACHD programmes into seven different centre types based on their staff resources and composition of interdisciplinary teams.

Results

Only four centres fulfilled all medical and non-medical staffing requirements of the ESC recommendations. Although 60% of the centres offered all forms of medical care, they had incomplete non-medical resources (i.e., specialised nurses, social workers, or psychologists). The participating centres had 226,506 ACHD patients in active follow-up, with a median of 1500 patients per centre (IQR: 800-3400). Six per cent of the patients were followed up in a centre that lacked a CHD surgeon or congenital interventional cardiologist.

Conclusions

A minority of European ACHD centres have the full recommended staff resources available. This suggests that as of 2016 either ACHD care in Europe was still not optimally organised, or that the latest ESC recommendations were not fully implemented in clinical practice.

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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