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Learning objectives
To understand why a specialist valve clinic is needed.
To understand the clinical and organisational needs of a valve clinic and how these differ from a general clinic.
To understand the links between a valve clinic and broader aspects of a specialist valve service.
To understand which cardiac conditions can be managed in a specialist valve clinic.
To understand the elements of a consultation focused on valve disease.
Introduction
Specialist outpatient clinics were first established by cardiologists with a broader involvement in valve disease including inpatient opinions and care (figure 1).1 2 This article will concentrate on the core outpatient clinic.
Guidelines3–5 now recommend prophylactic surgery for severe mitral regurgitation caused by prolapse provided that repair can be virtually guaranteed at close to zero risk. This has led to discussion of service requirements and quality standards to define ‘heart valve centres’.6 7 Valve clinics are important in a heart valve centre since their core aim is to follow patients and refer to a surgeon before significant left ventricular (LV) decompensation or adverse clinical events supervene. However, valve clinics can also improve care in district hospitals with no onsite cardiac surgery or transcatheter programmes.
It is easy to see valve care almost exclusively in terms of surgery or interventional procedures since these dominate cost, commercial concerns, news items and in consequence governmental and regulatory discussions. However, the majority of patients in hospital services are initially managed conservatively (figure 2).8–11 Furthermore, a large proportion of patients with valve disease are undiagnosed or being seen within the community and better methods of detection and referral to secondary services are needed. The specialist valve clinic should be seen as the centre of a valve disease network (figure 3) initiating and coordinating care between cardiac centres, referring hospitals and the community.
This article describes why a valve clinic is needed, who may be seen and how a clinic can be set up and managed. It aims to describe the evidence available and to offer practical advice about designing and running a clinic.
Why: why are valve clinics needed?
Patients with heart valve disease are often cared for by physicians or cardiologists lacking specialist competencies in valve disease. This is at a time when knowledge about valve disease is expanding and more than ever can be done by surgery or interventional techniques. Furthermore, the assessment of valve disease, particularly aortic stenosis (AS), is more complicated as our population ages because of comorbidities affecting LV response, symptoms and the risks of intervention. Determining the appropriateness and timing of surgery for secondary mitral regurgitation may also be hard.
This lack of expertise can lead to suboptimal care. In surveys in Europe and the USA, guidelines are frequently either not known or not followed12–15 while valve clinics improve adherence to guidelines.15–17 Cardiologists without valve competencies are less able than specialists to judge whether a patient with AS has symptoms especially as the first symptom may be a reduction in exercise capacity rather than overt breathlessness or chest pain.18 19 Approximately 10% of patients referred to our valve clinic as asymptomatic are found to have symptoms on comprehensive questioning. The duration of symptoms before detection was 76 (SD 75) days in patients followed in a valve clinic but much longer, 352 (SD 471) days (p<0.0001) in general cardiology clinics.18 Exercise testing is recommended in the European Society of Cardiology guidance for all valve disease since revealed symptoms, which occur in approximately 40% of patients with asymptomatic severe AS,20 are a class I indication for surgery in all valve disease.3 However, exercise testing is only performed in 5%–10% of those in whom it is indicated.14 Delays in assessment mean that approximately 50% of patients with all types of valve disease have severe symptoms at surgery which increases their risk and delays recovery compared with surgery for more mild symptoms.21
There are major geographic differences in access to aortic valve replacement22 (figure 4) and TAVI. This is thought to be mainly related to differences in detection rates and an important role of a valve clinic is to improve detection by education and training and exploring novel methods of delivering echocardiography to at-risk groups in hospitals and in the community. At least a third of elderly patients are not referred for surgery despite clear clinical indications23 24 and valve clinics are expected to improve this by a better knowledge and application of guidelines.15–17
In general, about 95% of patients with mitral regurgitation as a result of mitral prolapse are repairable yet the repair rate at individual centres ranges from 0% to 100% with a mean 67% both in the UK22 and in New York State.25 This is improved by a valve clinic since a core aim is to assess patients accurately and refer to the appropriate surgeon in a heart valve centre.6 7
Who: which patients should be seen?
A comprehensive valve service should accommodate all types of valve patients and not just those being considered for intervention. A survey conducted in the UK in 201526 showed that 11% of DGH and 60% of cardiac centres had valve clinics. Clinics were run daily in 1 (3%), weekly in 30 (88%) and monthly in 3 (9%) hospitals . One of 34 valve clinics saw only patients with AS. A multidisciplinary meeting27 was held for general valve disease in 24 (69%) centres but 3 (9%) centres discussed only aortic valves cases. Multidisciplinary team discussions for aortic valve disease were dominated by TAVI.
It is important to establish inclusion and exclusion criteria since our experience is that patients discharged after general medical or surgical admissions may be referred to a valve clinic if there is any degree of valve abnormality on echocardiography. Most clinics will elect to see patients with moderate or severe native valve disease (table 1). Although there is a view that patients after cardiac surgery28 can be discharged to the community with instructions to present should problems arise, patients do not necessarily know when to seek help and guidelines are clear that annual follow-up is required in a cardiology service.3 4 However, this can be in a physiologist/scientist-led clinic for those requiring echocardiography and otherwise in a nurse-led clinic. Only 19 (56%) of the centres in the 2015 survey26 saw patients following valve surgery, although 10 (29%) saw patients both before and after TAVI.
Supplemental material
It may not be appropriate to see patients who will never be suitable for intervention and who would be better seen in another clinic, for example, an elderly care clinic. Patients with secondary mitral regurgitation may be better suited to a heart failure service but this will depend on the degree of LV dysfunction and the grade of mitral regurgitation both of which may change with time. Therefore, there needs to be close communication with heart failure services, for example, via team meetings (figure 4).
A degree of valve thickening or regurgitation is effectively normal above the age of 65 years and was shown in 44% of the OxVALVE sample.8 It would be wrong to label patients with normal age-related changes as having valve disease since this risks causing health anxiety. These patients should not normally be followed in a valve clinic but individuals could be recommended for repeat open access echocardiography in 3–5 years if there is an aortic V max >2.5 m/s particularly in younger patients. Similarly, the population prevalence of mitral prolapse is at least 2%29 and patients with no regurgitation or trivial to mild regurgitation are unlikely to progress unless they develop endocarditis.30 They may not need follow-up but if there is mild regurgitation there could be a 5-year open-access follow-up or call-back. Similarly, patients with normally functioning bicuspid valves and normal aortas usually need follow-up every 3–5 years.31 Some clinics will choose to follow patients with any cause of aortic dilatation usually annually or patients at risk of dilatation like Turner’s syndrome usually every 5 years.
Follow-up is recommended after inpatient care for endocarditis at 1, 3, 6 and 12 months and thereafter depending on the residual valve disease.32 This was offered in only 11 (32%) clinics in the 2015 survey.26
How: how can a clinic be set up and managed?
Roles of a valve clinic
The main aims are to improve clinical expertise and organisation (figure 1). A specialist clinic saves money compared with usual care mainly from a reduction in unnecessary echocardiograms and visits15 33 and also lowers salary costs34 when follow-up is devolved from a cardiologist to nurses or physiologist/scientists (table 2). One-stop echocardiography is convenient and cuts transport costs and less visible costs like days off work, but was only available in 82% in the 2015 survey.26 Informal feedback shows that patients value seeing the same person each time, and the reduced waiting times associated with a properly coordinated one-stop service.17 One formal survey showed 100% satisfaction.35
Patient education and engagement are important roles of the valve clinic and should cover:
Surgery: what symptoms to look out for, how surgery is timed, the importance of mitral valve repair, the possible reasons for choosing a TAVI in place of a surgical valve and what types of surgical valves are available. Most patients want to share decision-making with their surgeon on the type of valve replacement36 and this leads to better quality of life after surgery.37 A valve clinic provides stabilising continuity between preparation before surgery and care after discharge.
Pregnancy: in women of childbearing age discussion about contraception and timing of pregnancy in relation to valve or aortic surgery need to be routine.
Endocarditis: ways of reducing the risk of developing infective endocarditis including dental surveillance are important. The conclusion of a discussion about antibiotic prophylaxis should be recorded and communicated with the general practitioner (GP and dentist, for example, using a card (see online supplementary information 1).
Anticoagulation: the need for bridging from warfarin to heparin in patients having non-cardiac surgery with mechanical valves is not widely appreciated and local protocols should be discussed.
Supplemental material
Providing digital or written information for patients is recommended,1 2 but only nine (26%) clinics in the 2015 survey26 used information leaflets and two (6%) had a dedicated website. Patients should be cautioned against the unreliability of health articles in some newspaper articles and most websites other than the National Health Service sites.38
Disciplines
The core specialist is usually a non-invasive cardiologist with coexistent specialisation in cardiac imaging or heart failure. However, an interventional cardiologist led in four (12%) and a surgeon in two (6%) clinics in the 2015 survey.26 It is likely that a large centre will have clinics for general valve cases and others for patients referred for consideration of surgery or transcatheter procedures.
Physiologist-led/scientist-led clinics alone were offered in eight (24%) of the 2015 survey and combined with cardiologists in four (12%). Nurse-led clinics alone were offered in three (9%) of the 2015 survey and combined clinics in four (12%). Nurse-led clinics usually have 30 min appointments39 allowing more time for discussions about lifestyle and other pastoral matters than can usually be offered in a conventional cardiology clinic.
All disciplines should have specialist competencies. There is, as yet, no formal qualification to establish competency in valve disease for any medical discipline. However, for all disciplines competencies should be based on the elements as mentioned in box 1.40
Methods of demonstrating specialist competencies in valve disease
Training
Study at a specialised centre (all disciplines).
Valve-related training events formally designated by accreditation points from a representative national or international body.
Case discussions on recognised platforms, eg, MedShr.
For a surgeon adequate numbers and quality of results according to standards available in opinion papers and defined by national specialist societies.
For physiologist/scientists and nurses participation in local or national clinical skills courses and ideally an MSc or PhD in cardiology.
Specialised practice
Examples of essential practice depend on discipline but include supervision of a valve clinic, performing specialist valve imaging studies, performing mitral valve repairs, being part of the endocarditis team, seeing inpatient referrals with valve disease and writing departmental protocols.
Ideal criteria include involvement in teaching and in local or multicentre research.
Audit of results is a necessary part of maintaining a high-quality service.
Continuing professional development
Meetings with valve-specific scientific or educational components, many organised by national or international societies.
Membership of a specialist Society is encouraged, eg, the European Society of Cardiology Council on Valvular Heart Disease, the Society of Heart Valve Disease or the British Heart Valve Society.
Facilities and links
Echocardiography is the key investigation and should be available as a one-stop service from operators and in departments accredited by national or international systems. Other imaging techniques and biomarkers must be available (box 2),41 but were often missing in the 2015 survey.26 Stress echocardiography was available in only 53% of district hospitals and 71% of cardiac centres; cardiac magnetic resonance in 35% and 94% and cardiac CT in 59% and 71%.
Tests needed for valve clinic
Blood tests including B-type n atriuretic p eptide ( BNP ): a BNP level three times the upper limit of normal is a class IIa indication for aortic valve replacement,3 but it is not usually used routinely. It is most useful when there are multiple causes of breathlessness to help differentiate the effect of valve disease and non-cardiac conditions. Blood cultures should also be feasible.
Exercise test: this is indicated in all patients with severe asymptomatic disease.3
Stress echocardiogram: this is indicated for a patient with symptoms despite moderate aortic stenosis.
Cardiopulmonary exercise test: this is not essential but can be useful to differentiate cardiac and respiratory causes of breathlessness.
Lung function: for the investigation of breathlessness of uncertain origin and assessment before surgery.
CT: this is needed for the assessment of the aorta particularly if the echocardiographic images are suboptimal as well as planning for transcatheter techniques.
Magnetic resonance scan: this is useful to assess aortic diameter, branch pulmonary artery stenosis or right ventricular volumes in severe pulmonary regurgitation. It is occasionally useful if mitral or aortic regurgitation is of uncertain grade on the echocardiogram.
There need to be links with many other services (figure 3) for preoperative preparation, follow-up of the index condition or ancillary concerns. There also need to be service-level agreements with other centres offering assessments or treatments not available locally, for example, PET or percutaneous closure of paraprosthetic regurgitation.
There needs to be close communication with referring hospitals and the community to ensure that up-to-date data are shared, and immediate re-referral occurs for new symptoms particularly of possible endocarditis. This is facilitated by educated, empowered patients alerting their GP or valve clinic and by electronic systems for referral between physicians.
The clinical assessment
The clinical consultation in cardiologist-led, physiologist/scientist-led and nurse-led clinics includes the elements as given in box 3. Exercise testing extends the history by revealing symptoms. It is particularly important for asymptomatic severe AS since the risk of sudden death is 3%–4% in the 3 months after the onset of overt breathlessness or chest tightness.42 It is our practice to exercise patients when they cross the arbitrary threshold between moderate and severe and then aim to exercise patients with severe disease approximately every year. We do not exercise patients in whom surgery will only be performed for significant spontaneous symptoms or in whom multiple reasons for breathlessness would make interpretation impossible. We also exercise patients on first referral with high-end moderate AS, usually Vmax >3.5 m/s since these do not have a benign outcome (figure 5).20 43
Points to cover in the routine annual follow-up includes native and postrepair or replacement surgery
History
New symptoms? Change in exercise capacity? Slowing down?
Psychological or cognitive issues including understanding of condition.
What to look out for (transient ischaemic attack, bleeding, fever, breathlessness).
Management of other conditions, eg, chronic obstructive pulmonary disease.
Medication check.
Examination
New atrial fibrillation? Blood pressure?
Progression of valve disease?
Evidence of heart failure?
Postsurgery scar problems: keloid, pain, wire protruding.
Anticoagulation
INR control: stable? Frequency of testing? Diet if INR variable. Bleeding? Home testing?
Correct INR range?
Could a NOAC be indicated (valve disease other than mechanical prosthesis or mitral stenosis).
When can warfarin stop after surgery?
Perioperative anticoagulant bridging.
Planning pregnancy.
Endocarditis advice
Dental surveillance and need for antibiotic prophylaxis.
Other advice, eg, tattoo, piercing.
What symptoms to look out for.
Lifestyle advice
Smoking cessation.
Weight loss.
A cardiologist will need to be involved if protocol-agreed clinical or echocardiographic thresholds are reached or a change in medication is needed or a problem is identified. The most common problems are a new arrhythmia which we find in 4.6% of our devolved patients or poor INR control.39 We find approximately 10% from the physiologist/scientist clinic need advice from a cardiologist and a further 10% need to be seen. From the nurse-led clinic 6% need advice and 6% to be seen.
The nurse can be indemnified to refer directly to other services,39 for example, obesity, respiratory, psychology, family planning, dermatology, erectile dysfunction. At Guy's and St Thomas' Hospitals (GSTT), the nurse runs a helpline to encourage early reporting of symptoms. Frequently asked questions from the clinic and the helpline are given in box 4.
Frequently asked questions from the clinics and helpline for operated patients
How long will my valve last?
Patients outside valve clinics are sometimes told that mechanical valves only last 10 years.
How can I prolong the life of my biological valve?
Needs a discussion of blood pressure and diabetes control and avoidance of endocarditis.
Is my valve disease hereditary?
There is an approximately 10% prevalence of bicuspid valve/dilated aorta in first-degree relatives compared with 1% in the general population. There is a 2% population prevalence of mitral prolapse in the population and severe calcific aortic stenosis occurs in 3% of people aged over 75 years so these conditions are so common they might occur in families without there being a genetic link.
How can I prevent endocarditis?
See endocarditis card in online supplementary information 1.
Valve noise
This is noticed by 72% early after surgery and regarded as a nuisance by 22% but fades within a year.17 Some find it reassuring to be reminded that the valve is working.
Compatibility with magnetic resonance or CT
All valves are compatible with both but this still causes concern.
Non-cardiac surgery
Needs an assessment of the state of valve and heart and a discussion of anticoagulation bridging.
Pregnancy
Family planning needs careful discussion in all women of childbearing age with respect to contraception, and anticoagulation. As appropriate, more detailed discussions with the closest cardiac-obstetric team will be needed.
Sex
This includes when to restart after surgery and also new erectile dysfunction.
Exercise
Usually this requires common-sense advice about avoiding contact sports, weight-lifting (not weight training) or other extremes of exercise.
Flying
This is not usually a problem in stable patients before or after valve surgery, but needs discussion of insurance and INR testing. Certificates are sometimes needed if holidays have to be cancelled for cardiac surgery. It should usually be avoided in symptomatic patients being referred for surgery.
Symptoms
New symptoms sometimes trigger an early appointment but usually only emerge at a routine appointment.
What symptoms to watch out for?
Frequency of echocardiography (figure 6).
Improved detection
Referral into the valve clinic needs to be optimised and facilitated, for example, with alerts from the main echocardiography laboratory, presentations at GP study days, information to general cardiology, elderly care or pre-admission clinics. We use a murmur clinic44 to collate open access referrals allowing specialist assessment by a physiologist/scientist and automatic referral of patients with moderate or severe valve disease to the valve clinic. However, auscultation is not commonly performed even for patients with symptoms45 and is insensitive. A survey of open access studies46 found that significant valve disease was suspected from a murmur in 127 patients but was unsuspected in a further 177 cases with a possible cardiac symptom, chronic obstructive pulmonary disease with disproportionate breathlessness or atrial fibrillation. Using these criteria and also age ≥75 years to focus point-of-care scans, moderate or severe valve disease was found in 2% in a GP practice.47
Summary
Despite a lack of good quality research there is reasonable consensus on important aspects of valve care. The major challenge is to ensure that these inform direct patient care since physicians and cardiologists in general clinics tend not to follow established guidelines. It is therefore vital that care is delivered by specialists with competencies in valve disease and that interventions are delivered at heart valve centres defined by recognised standards.
Key messages
Valve clinics improve care and devolved nurse or physiologist/scientist-led clinics also reduce cost.
The clinics’ core role is to follow patients with moderate or severe valve disease and refer for intervention at the correct time.
Patients suitable for a valve clinic have native disease, repaired or replaced valves, prior endocarditis or dilated aortas.
Most patients with valve disease are outpatients but the valve clinic is also integrated with general valve services including inpatient care, teaching and training and multidisciplinary team meetings.
Valve networks allow coordination of patient flows between community, general hospitals and surgical centres.
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Supplemental material
References
Footnotes
Contributors There are no other contributors.
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 Commissioned; externally peer reviewed.