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Guidelines only improve care if they are read and implemented. In the 16 years since the first EuroHeart Survey,1 there have been seven American Heart Association and European Society of Cardiology guidelines on heart valve disease. Despite these, the report from the IMPULSE registry in this issue of Heart2 shows that service delivery for patients with severe aortic stenosis (AS) is still inadequate. Nearly one-quarter, 24%, with indications for intervention were planned for conservative management while 36% had a decision for intervention apparently without a recognised indication. Overall, 26% received apparently inappropriate treatment decisions which is similar to the 30% shown by the first EuroHeart survey.1
The IMPULSE registry, funded by Edwards Lifesciences, is a prospective international multicentre registry-based cohort study evaluating the care of patients with severe AS3 in 23 centres in 9 European countries. It originally aimed to test an intervention designed to improve decision-making using three different cohorts of patients. In the first cohort, entered onto the database during months 0–3, demographic data would be collected prospectively. The referring physician would be contacted at 3 months after enrolment for details of the treatment plan. For patients entered during the intervention period during months 4–9, the study nurse would inform the referring physician 1 week after the diagnosis of severe AS was made in the echocardiography laboratory that the patient was being entered into a quality improvement exercise. The referring physician would be contacted again after 3 months for details of the treatment plan. Finally, in months 10–12, the study nurse would stop informing the referring physician to see whether learnt improvements would continue.
In the event, the current study2 reports only the demographic data and treatment decisions made for 2071 consecutive patients with severe AS recruited over a period of 2 years. The results of the planned intervention are not reported and, frustratingly, despite its prospective design the IMPULSE registry fails to offer insights into the reasons for apparently inappropriate treatment decisions or ways of improving these. The authors themselves reanalysed their results after excluding patients with frailty or comorbidities and this reduced the proportion apparently denied intervention from 24% to 16%. It is possible that some, maybe many, of the remaining patients refused surgery or wanted more time to consult with their relatives. No decision at all was recorded in 171 (7.9%) patients. Were there differences in practice that might have shed light on differences in care? For example, how many of the centres had specialist valve clinics and did practice differ between these and general cardiology clinics? These questions are unanswerable from the design of the registry.
Despite these limitations, the IMPULSE registry is a useful ‘snapshot’ of current care and reminds us that the key to improving care for patients with valve disease is to develop a comprehensive valve service at three levels: (1) the detection of valve disease; (2) referral of patients with moderate or severe disease to a specialist valve clinic to plan management and follow-up until intervention is indicated and (3) intervention in a heart valve centre with recognised performance standards.
Detection. Valve disease remains under-detected. In the OxVALVE study,4 4.9% of 2500 people aged ≥65 were known to have moderate or severe valve disease but a further 6.4% were detected by a community screening programme. A comprehensive service needs to include a plan to improve early diagnosis by increasing awareness of valve disease with education and training but also by widening access to echocardiography. This can be done in a variety of ways including open access services, community hand-held point-of-care studies or murmur clinics. It is important to publicise that valve disease is found in patients not just with a murmur but also with atrial fibrillation4 and chronic lung disease with disproportionate breathlessness. In the IMPULSE registry,2 16% had atrial fibrillation and 11% had chronic lung disease. Intelligent software may help trigger an echocardiography request or to prompt the diagnosis which can still be missed despite a characteristically abnormal echocardiogram.
Specialist valve clinics . These are seen as best practice.5 We know that guidelines are commonly not known or ignored1 6 while specialist valve clinics improve adherence to guidelines.7 It is also known that the onset of symptoms is detected far earlier in patients followed in a valve clinic compared with a general cardiology clinic.8 At entry to the IMPULSE registry,2 80% had symptoms and 40% of these were already in class III or IV confirming that late referral is still common as previously shown in the EuroHeart Survey. Probably the most important advantage of a specialist valve clinic is having cardiologists with training and experience in valve disease who undertake to read the valve-related literature and attend relevant courses and conferences. Care could probably be improved in general clinics provided the cardiologist had similar specialist valve competencies.
Heart valve centre. It is important for the valve clinic to be associated with a heart valve centre with adequate processes and standards9 including multidisciplinary team meetings, full cardiac and extracardiac support services, expert imaging, surgeons and interventional cardiologists with specialist valve-related competencies, and audit of results. There needs to be adequate provision of cardiac and intensive care beds. A short waiting time for intervention is particularly important for symptomatic severe AS since the mortality rises sharply as soon as symptoms develop.
Organising a valve network (figure 1) linking the community, valve clinics within district hospitals and the heart valve centre prompts information sharing and communication. Central to this is the educated and engaged patient who is aware of warning symptoms but also expected standards of care, the choice of treatments available and results of conservative management and intervention in the hospitals in their own and other networks. Patients or general practitioners should be able to send alerts as soon as a symptom of AS or possible endocarditis develop. Electronic sharing of data is important and in the future it is possible that linked smart phones or intelligent watches may help to detect the first sign of reduced exercise capacity.
The valve disease network.
What is needed now is a reconfiguration of service delivery to improve detection, and encourage valve-specific competencies, specialist valve clinics and heart valve centres. It is likely that these changes will be propelled by educated and engaged patients and by service commissioners as much as by cardiologists.
Footnotes
Contributors I wrote this commissioned article.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.