Enhanced education to improve aortic stenosis patient pathways: the AortiCare programme

Aortic stenosis (AS), which affects more than 10% of people aged 75 years or older, is the most common primary valve lesion leading to intervention or death in high-income countries.1 Symptomatic severe AS has a dismal prognosis and early intervention is strongly recommended in almost all patients.2 However, despite the development of effective aortic valve replacement modalities, there has been no apparent decline in mortality burden over recent years and undertreatment persists (in more than 40% of patients with severe AS).3 AortiCare – patient pathways for aortic stenosis care. To address this, an innovative new educational programme was launched in 2024, co-organized by the European Society of Cardiology (ESC) and the ESC’s Association of Cardiovascular Nursing and Allied Professions (ACNAP). ‘Low detection rates, lack of symptom awareness, delayed referral processes and undertreatment are severely impacting the outlook for patients with AS,’ says Mrs Maggie Simpson (University of Edinburgh, UK), a member of AortiCare’s Organising Committee and ACNAP Board Member. ‘Devised with input from international expert cardiologists, cardiac surgeons, imagers, cardiology nurses and ESC Patient Forum representatives, this educational package aims to support improvements across the spectrum of AS diagnosis, referral and management.’ The initiative has been designed to enhance the learning of different medical professionals, for example, helping to raise the profile of AS among primary care professionals who may see undiagnosed patients in their practice and provide general cardiologists, nurses and allied professionals with more specialized valve disease knowledge. ‘The programme recognises the changing face of the healthcare professionals encountering patients with AS in their daily practice and aims to fill their educational gaps,’ notes Mrs Simpson. A series of four CME-accredited interactive expert-led webinars was the first offering to be made available in AortiCare. Mentioned in the webinars are recent insights into the treatment of AS, particularly newly published data on transcatheter aortic valve implantation (TAVI). Professor Fabien Praz (University of Bern, Switzerland), an interventional cardiologist and member of the AortiCare Organising Committee, explains: ‘Evidence has been evolving over the last two years on the value of TAVI compared with surgical aortic valve replacement in certain patient groups, such as women – who are currently particularly overlooked where effective treatments are concerned – and patients with some specific anatomies. We have also learned a lot from the large independent DEDICATE randomised controlled trial comparing TAVI with surgery in patients with severe AS who are at low or intermediate surgical risk.4 It is essential that everyone involved in AS care has an understanding of the benefits/risks of the treatment options in different patient groups, both for their own knowledge and also to enable them to provide patient education that will help in shared decision making.’ The AortiCare webinars will soon be complemented by other specifically designed resources. An interactive eLearning Course will provide information about the pathology, aetiology and epidemiology of AS, along with symptoms, diagnosis, referral pathways and post-intervention follow-up. This will be supplemented with an intentionally less-structured toolkit of videos, podcasts and relevant articles. Professor Praz says: ‘We are creating new materials and also bringing together relevant content from congresses and journals in one freely available place that will be searchable by topic. We hope the variety of resources provided will support education in an enjoyable and dynamic way, and allow people to learn at their own pace and fulfil their own educational aims.’ According to the 2021 ESC/European Association for Cardio-Thoracic Surgery Clinical Practice Guidelines, dedicated nursing personnel with expertise in the care of patients with valvular heart disease are an important asset to the Heart Team,2 but standardization of the role of specialist nurses is currently lacking. A key element of AortiCare is to more clearly define the role of valve clinic coordinators (VCCs) and support their work as part of a collaborative multidisciplinary approach. Mrs Simpson notes, ‘The increasing numbers of patients with AS and the complexity of their needs means that VCCs have never been so essential to streamlining patient pathways, facilitating communication between different healthcare professionals, and improving the efficiency and quality of the Valvular Heart Team’s work. Despite this, many institutions do not have dedicated VCCs and if they do, their scope varies considerably between centres and countries.’ Association of Cardiovascular Nursing and Allied Professions is currently working on a position paper, led by AortiCare Task Force Members, Mrs Bettina Højberg Kirk (Rigshospitalet—Copenhagen University Hospital, Denmark) and Doctor Sandra Lauck (University of British Columbia, Vancouver, Canada), which provides a standard framework for the VCC role, outlining the competencies required and delineating their place within the Valvular Heart Team. ‘Validating VCCs may encourage institutions without them to create these positions and may facilitate existing VCCs to share their experiences. In addition, more nurses could be inspired to progress their careers in this direction,’ comments Mrs Simpson. Mrs Højberg Kirk highlights the benefits that VCCs bring to patients and their families: ‘Patients with AS are frequently elderly, frail and with many comorbidities. VCCs are well placed to apply standardised pathways in a tailored fashion to meet the needs of the individual patient. In addition, the VCC is often the patient’s main point of contact. Their role in providing information, answering questions and updating records is vital, particularly when long waiting lists mean a considerable delay between referral and the procedure, during which the patient’s status may change.’ Results from the COORDINATE pilot observational registry in Germany indicate that implementation of a TAVI coordinator programme increased patient satisfaction, with more consistent/intensive contact between patients and staff reported, and more post-TAVI support.5 These results were confirmed in the larger European BENCHMARK registry, where implementation of eight TAVI best practices and a TAVI coordinator led to high degree of patient satisfaction.6 The roll out of the AortiCare programme is intended to extend beyond healthcare professionals. ‘We are hoping to develop materials for patients to give them a better understanding of their symptoms, treatment options and what to expect after an intervention,’ notes Mrs Simpson. ‘Input from members of the ESC Patient Forum has been invaluable in the design of the AortiCare resources so far and will be essential in the development of patient guides.’ Concluding, Professor Praz issues a compelling message: ‘Doing nothing is not an option – the burden of AS and the need to improve outcomes is too great. The AortiCare programme provides the tools needed to inform healthcare professionals and empower them to implement optimised patient pathways. We encourage everyone to visit the AortiCare website to see what they can learn.’ https://www.escardio.org/Education/ESC-Education-by-Topic/aorticare. C.O. is an employee of the European Society of Cardiology. AortiCare Organising Committee and Taskforce Maggie Simpson (University of Edinburgh, Edinburgh, United Kingdom of Great Britain and Northern Ireland), Fabien Praz (University of Bern, Bern, Switzerland) and Bettina Højberg Kirk (Rigshospitalet—Copenhagen University Hospital, Copenhagen, Denmark).

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