Paediatric cardiology

      i    Description of the specialty and clinical needs of patients

           Paediatric cardi...
PART 2 ■    Paediatric cardiology

Patients are evaluated by a secondary, or visiting tertiary, care specialist using t...

              invasive services for patients. This is very likely to devel...
PART 2 ■   Paediatric cardiology

v   Delivering a high quality service

    Characteristics of a high quality service

        vi   Quality standards and measures of the quality of specialist s...
PART 2 ■    Paediatric cardiology

In cardiac or paediatric intensive care unit (PICU) areas, paediatric cardiology con...

            Specialised investigation and therapeutic procedure clinics Th...
PART 2 ■   Paediatric cardiology

❚   MRI studies
❚   24-hour arrhythmia and blood pressure monitoring
❚   tilt testing...

            Management duties
            Paediatric cardiologists will be...
PART 2 ■    Paediatric cardiology

   Consultant paediatric cardiologists w...

        1.   Department of Health. The report of the pu...
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Paediatric cardiology


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Paediatric cardiology

  1. 1. Paediatric cardiology i Description of the specialty and clinical needs of patients Paediatric cardiology is a specialty concerned with all aspects of care of patients with congenital heart disease, from the fetus to adulthood. Paediatric cardiologists collaborate with adult cardiologists in the management of congenital heart disease in adolescents and adults. There is ongoing development of training and appointment of consultants with an interest in adults with congenital heart disease. The incidence of congenital heart disease is eight in 1000 live-born babies and this has remained consistent over several decades. There have been great advances in the diagnosis and management of congenital heart disease in the last two decades. However, the provision of care has not kept up with these developments. The paediatric cardiology specialist service attempts to meet the need for comprehensive assessment of patients, non-invasive investigations and invasive treatment in the form of interven- tion or surgery. There are a limited number of tertiary centres and care is usually delivered nearer to the patient’s place of residence in the form of outreach hospitals. Outpatient clinics are arranged in conjunction with local consultant paediatricians. The paediatric cardiology service has become increasingly subspecialised with developments in areas such as prenatal detection and treatment, interventional techniques, electrophysiological treatment of arrhythmias, treatment of pulmonary hypertension and cardiac transplantation, and non-invasive imaging such as three-dimensional echocardiography (ECHG) and magnetic resonance imaging (MRI). ii Organisation of the service and patterns of referral Primary, secondary and tertiary levels The paediatric cardiology service is becoming integrated between primary, secondary and tertiary levels of care. It aims to provide a seamless transition for patients from primary to secondary care, then to tertiary care and back, based on agreed protocols. Primary care The main emphasis should be on the early detection and prevention of congenital heart disease but there are many limitations. In primary care, the symptoms of congenital heart disease must be recognised and appropriate referral made to secondary care for further assessment and treatment. An important area of management in primary care is the detection and differentiation of innocent from pathological murmurs. Secondary care Patients undergo evaluation of their symptoms and appropriate investigations are arranged. In many cases, the secondary care paediatrician is able to reassure patients, for example those with innocent murmurs. However, the vast majority of patients with suspected cardiac problems are referred to a tertiary care specialist either at the tertiary care centre or at an outreach clinic. It is important that such assessments in secondary and tertiary care are made quickly and efficiently. 236
  2. 2. PART 2 ■ Paediatric cardiology Patients are evaluated by a secondary, or visiting tertiary, care specialist using two-dimensional ECHG. Much of the non-invasive assessment, diagnosis and treatment of patients with congenital heart defects can be carried out at the secondary care centres. Although this type of service has major advantages for patients, its delivery has stretched the services of the tertiary centres. This is because the expertise for managing congenital heart disease in outreach clinics is lacking at secondary care level and is largely dependent on tertiary care specialists. Tertiary care This incorporates highly specialised investigation and treatment, including non- invasive diagnosis by specialised imaging techniques (eg two-dimensional and transoesophageal ECHG and MRI) and invasive procedures (eg diagnostic and interventional cardiac catheterisation, electrophysiology studies, pacemaker implantation and surgery). Invasive investigation and treatment and cardiac surgery are performed exclusively in tertiary centres. Some forms of treatment, such as cardiac transplantation, should be classified as even more specialised. Services for adolescents and adults with congenital heart disease are provided mainly in the tertiary centres. Special patterns of referral The pattern of referral of patients with congenital heart disease is variable. Some patients are referred by their GP to either the secondary or tertiary centre. The GP may see patients with a murmur or symptoms such as palpitations or chest pain and suspect these to have a cardiac origin. Prenatal detection, not yet available comprehensively throughout the country, enables the diagnosis of congenital heart defect before the baby is born. This allows the parents to be much better prepared for the proposed management plan. The baby may be delivered at the tertiary centre and the treatment is then elective rather than on an emergency basis. Some babies are referred from secondary care centres because of a suspicion of congenital heart disease. They are evaluated in the outreach clinic or at the tertiary centre clinic, either as outpatients or inpatients depending on their clinical condition. Children who need cardiac surgery are referred to the cardiac surgeon by the paediatric cardiologist, not by the GP or secondary care specialist. A patient with suspected congenital heart disease should be referred to a secondary care specialist if considered non-urgent, for example for assessment of an asymptomatic murmur, or to a tertiary care specialist if urgent, for example if a baby is cyanosed or breathless. Ways of working, clinical networks and community arrangements Networks of care are being developed around the country. The aim is to produce a seamless pattern of care for the patient from the first point of contact with the healthcare system to whatever complex investigation or treatment is required. There is still a deficient network of care at the primary care level for congenital heart disease, but collaboration is better between secondary and tertiary care levels. These networks are based in a tertiary centre and its catchment population. Paediatric cardiologists lead multidisciplinary teams (MDTs) in the tertiary care centres. In addition to various specialist medical staff, these involve nursing staff, outreach or cardiac liaison nurses, radiographers, technicians and play therapists. Paediatric cardiologists coordinate treatments with the cardiac surgeons and intensive care staff. Outreach clinics are performed jointly by paediatric cardiologists and local paediatricians. Some centres have paediatricians with special expertise in paediatric cardiology and are able to offer non- 237
  3. 3. CONSULTANT PHYSICIANS WORKING WITH PATIENTS invasive services for patients. This is very likely to develop into a more clearly defined service in most outreach hospitals in the future. Patients with congenital heart disease usually require follow-up into adult life and facilities for this need to be better organised or, indeed, developed. In most cases these adult patients will need to be seen in tertiary care centres but as the service delivery is modified many will be seen in joint clinics in outreach hospitals. The workload of paediatric cardiologists will continue to increase and secondary care specialists will have a hugely important role in the future. The demands of providing such a comprehensive service are enormous, particularly in an era of consultant appraisal and revalidation, while maintaining clinical competencies and keeping specialist knowledge up to date. iii Working with patients/parents: patient-centred care Because of the complex nature of many congenital heart defects, it is of great importance that paediatric cardiologists work closely with the parents of children with congenital heart disease and with adolescent or adult patients directly. The options of conservative management, medical treatment, interventional treatment or surgical treatment will need to be discussed with the parents or the patients or both. These discussions will involve cardiac liaison nurses who can offer further support and information to the patients or parents. Information leaflets developed by hospitals or the British Heart Foundation (BHF) will help patients to understand their heart defect and its management. Local parent support groups also offer help. A considerable amount of information is available to patients and parents on the Internet and paediatric cardiologists and cardiac liaison nurses should be able to provide information about these websites. iv Interspecialty and interdisciplinary liaison Paediatric cardiologists work with many disciplines, including: ❚ paediatric cardiac intensivists ❚ anaesthetists ❚ other paediatricians or paediatric subspecialists ❚ paediatric intensive care nurses ❚ cardiac liaison nurses ❚ cardiac surgeons ❚ cardiac technicians ❚ radiographers ❚ pharmacists ❚ physiotherapists ❚ dietitians ❚ play specialists. Paediatric cardiologists must work effectively with these specialists as they may need to be involved closely in the management of babies and children with congenital cardiac defects and other non- cardiac diseases. 238
  4. 4. PART 2 ■ Paediatric cardiology v Delivering a high quality service Characteristics of a high quality service ❚ responds to the demands of the patients ❚ has sound quality assurance ❚ maintains audit and clinical governance ❚ keeps communication with patients’ families at the forefront ❚ has adequate backup from the IT department and good secretarial support. Such care can only be delivered by an integrated MDT consisting of the specialists listed above and supported by service managers. Information technology support is particularly important for maintaining databases of paediatric cardiac surgical activities, as emphasised in the Kennedy report.1 Development of electronic patient records will be of great help. Resources required for a high quality service A high quality paediatric cardiology service cannot be provided if the service and resources remain stretched beyond their limits. The fifth joint report on cardiothoracic services made recom- mendations about service requirements, in particular highlighting the need for the number of paediatric cardiology consultants to increase from one per million to one per half million population.2 This target has not been reached. The British Paediatric Cardiac Association (BPCA) and the specialist advisory committee (SAC) for paediatric cardiology have fully endorsed the standards and recommendations made in the Department of Health paediatric and congenital cardiac services review document and these recommendations need to be kept at the forefront when considering improvements of service.3 ❚ Patients need easy access to diagnostic services in secondary care units and coordinated access to tertiary care units. ❚ Comprehensive investigation of patients in outreach clinics, up to the time of referral to the tertiary centre, forms an important bridge between primary and tertiary care. ❚ Facilities for high quality non-invasive imaging are essential in the secondary care units. ❚ Appointment of paediatricians with special expertise in paediatric cardiology will need to be an essential component of the service in the near future. Such paediatricians will need to have educational links with tertiary units for their professional development. ❚ Rapid access clinics at both secondary and tertiary centres will need to be developed. ❚ Access to specialised facilities such as transoesophageal and three-dimensional ECHG, MRI and spiral computed tomography (CT) scanning should be straightforward. ❚ Care should be coordinated between the secondary care and tertiary care units and with the surgical unit for all patients, including adolescents and adults, with congenital heart disease. ❚ Highly specialised nurses to coordinate management between secondary and tertiary centres, such as cardiac liaison nurses, will be needed. 239
  5. 5. CONSULTANT PHYSICIANS WORKING WITH PATIENTS vi Quality standards and measures of the quality of specialist services The SAC for paediatric cardiology has developed a competency-based curriculum for training in paediatric cardiology and is looking at methods of clinical assessment and competence. Curricula are being developed for subspecialty training in interventional techniques in fetal cardiology and in adult congenital heart disease, for example. A further curriculum is being developed for paediatricians who wish to expand their expertise in paediatric cardiology for the purpose of providing a paediatric cardiology service in a secondary care unit. The BPCA is working towards developing standards and measures of quality. The SAC and BPCA have worked with the National Institute for Clinical Excellence (NICE) to develop guidelines for many interventional procedures, and other guidelines are being prepared ( Paediatric cardiology has worked closely with United Kingdom Central Cardiac Audit Database (CCAD) to collect data on paediatric cardiac catheterisation, interventions and surgery. The CCAD is able to provide data for activity and the surgical results of all the units as a means of providing accurate patient information. CLINICAL WORK AND/OR LABORATORY WORK OF CONSULTANTS IN PAEDIATRIC CARDIOLOGY Direct clinical care The exact pattern of working will vary from area to area. Paediatric cardiologists provide direct patient care in two ways: ❚ In the tertiary centre they provide comprehensive and coordinated care with other disciplines. ❚ In the outreach hospital, in collaboration with local consultant paediatricians, they provide an outpatient diagnostic imaging service for new patients and manage follow-up patients after a diagnosis of congenital heart disease has been made or treatment has been carried out at the tertiary centre. Tertiary centre Paediatric cardiologists are responsible for the assessment of patients presenting as acute emergencies or routine outpatient referrals; for performing procedures such as cardiac catheterisation and inter- vention; and for coordinating referral to cardiac surgeons. The exact pattern of working varies between regions. Inpatient work This will usually be at the tertiary centre. Regular ward rounds are essential in a consultant-led service; the frequency will vary depending on the number of inpatients. Generally, at least one ward round is carried out daily by a junior doctor but a consultant may also have a daily ward round, depending on how sick the patients are. Newly admitted babies with congenital heart disease are seen within a few hours of admission by the consultant paediatric cardiologist. If the baby is sick the consultant may review more than once during the day. In addition, the consultant will see patients both before and after diagnostic or interventional cardiac catheterisation procedures, and will perform these procedures. 240
  6. 6. PART 2 ■ Paediatric cardiology In cardiac or paediatric intensive care unit (PICU) areas, paediatric cardiology consultants will review patients on a daily basis. They will have a major role in the management of these patients together with the intensivists. Patients undergoing cardiac surgery are usually admitted under the care of the cardiologists, although cardiac surgical consultants will see the patients both before and after the surgery. Paediatric cardiologists usually review surgery patients in the outpatient clinic after discharge from the ward. Increasingly, cardiac liaison nurses provide parents with additional support after discharge. Prenatal detection In some units, consultant fetal cardiologists provide this important service, whilst in others it is consultant paediatric cardiologists. This aspect of service is consultant-led or consultant-based, but there is no clearly defined pattern of working around the country. Pregnant mothers are scanned either because of suspicion of congenital heart defect in the fetus raised at an obstetric unit or because of a family history. All of this work is outpatient based and is highly complex. Outpatient work Outpatient work patterns and the workload vary between different hospitals. Each consultant may have one to two outpatient clinics per week in the tertiary unit. In addition, there may be rapid access clinics, for which the consultant on service for the week has responsibility. The clinics in the tertiary centre vary from a general mix of patients to disease-specific clinics such as new murmurs, cardiomyopathy and arrhythmia. Counselling support/technician support/database Fetal cardiology and paediatric cardiology require additional support from cardiac technicians to help with the inpatient and outpatient service. In fetal cardiology in particular, counselling support is essential. Following detection of heart defects in the fetus, counsellors/cardiac liaison nurses offer support to the parents to prepare them for the subsequent treatment of their child. Database and IT support are crucial in all aspects of congenital heart disease service. Referral work Consultants conduct referral work on a day-to-day basis as required. Referral letters for patients may be from GPs, secondary care specialists and other specialists within the tertiary centre. Interspecialty and interdisciplinary liaison Effective liaison with other subspecialists is essential to comprehensive patient care. These subspecialists are usually based in the tertiary centre and may include general paediatric surgeons, paediatricians, subspecialty paediatricians, neonatologists, paediatric intensivists, microbiologists, dentists and, most importantly, paediatric cardiac surgeons. Multidisciplinary teams are crucial to the delivery of care for patients with congenital heart disease. Team members consist of doctors, nurses, outreach nurses, play specialists, technicians and clinical managers. Nurses play a role in the wards, the outpatient clinic and in outreach services. Technicians perform investigations such as electrocardiograms, echocardiograms, stress testing, arrhythmia monitoring and invasive investigations such as haemodynamic monitoring. Paediatric cardiologists oversee these teams and investigations and are involved in their interpretation. Case conferences Joint case conferences are important in the management of patients. A consensus approach is adopted and discussion usually involves a team of paediatric cardiologists, cardiac surgeons, neonatologists and intensivists. These conferences are held weekly to decide on management of patients and act as educational meetings. Number of patients The number of patients under each consultant and the method of practice varies between hospitals. In some units, a paediatric cardiologist may be on service for a whole week, in which all the inpatients will be under his/her care. Other units admit patients under each consultant. 241
  7. 7. CONSULTANT PHYSICIANS WORKING WITH PATIENTS Specialised investigation and therapeutic procedure clinics There are few such clinics in paediatric cardiology but the current trend is to develop pre-admission clinics for cardiac catheterisation, interventional procedures and surgery. Such clinics allow adequate time for the patient to receive full explanations of the proposed procedure in order to obtain informed consent. In the future, some of the clinics may be nurse-led to help the patients/parents prepare for the future plan of treatment. Outreach centres Outreach clinic services are offered by paediatric cardiologists within the catchment areas of most outreach hospitals. There are no outreach services in GPs’ surgeries for paediatric cardiology. Outpatient work Each paediatric cardiologist undertakes a monthly commitment to an outreach clinic in several outreach hospitals. In collaboration with consultant paediatricians in the outreach hospitals, paediatric cardiologists provide outpatient facilities for either new patients referred for a cardiac opinion or for those who have been investigated and treated in the tertiary centre and have been discharged back to the outreach hospital for follow up. These patients do not then need to travel regularly to the tertiary centre and care is provided near to the patients’ residences. The outreach clinic workload is usually extremely heavy and the casemix varies. There can be a high proportion of patients for evaluation of murmurs and sometimes a high proportion of patients already diagnosed by a tertiary centre or paediatrician with special expertise in paediatric cardiology in the outreach hospital. In the future, outreach work will need to be undertaken by consultant paediatricians with special expertise in paediatric cardiology with educational links to tertiary centres. Such service development will make the patient journey from the GP referral to a specialist opinion and completion of cardiac care of prime importance. On call for specialist advice and emergencies Paediatric cardiologists are available on call to advise trainees and to see patients immediately. These patients are usually newborn babies, or children with suspected congenital heart disease or previously diagnosed congenital heart disease. In these cases, the consultant will have to come into their base hospital out of hours to carry out emergency investigations and treatments. These range from ECHG, balloon atrial septostomies and, occasionally, diagnostic or interventional cardiac catheterisation. Specialised facilities and services within the specialty Paediatric cardiology relies heavily on specialised investigations carried out within their own service. Increased subspecialisation has resulted in paediatric cardiologists referring patients to other paediatric cardiologists for specific problems, such as electrophysiology studies. In tertiary care centres, the facilities provided include: ❚ electrocardiography (ECG) services ❚ exercise stress testing ❚ ECHG and transoesophageal ECHG ❚ myocardial perfusion scanning 242
  8. 8. PART 2 ■ Paediatric cardiology ❚ MRI studies ❚ 24-hour arrhythmia and blood pressure monitoring ❚ tilt testing ❚ diagnostic and interventional cardiac catheterisation ❚ electrophysiology studies ❚ pacemaker implantation ❚ radiofrequency ablation ❚ implantation of intracardiac defibrillators ❚ cardiac surgery. In secondary care outreach hospitals, the facilities provided include: ❚ ECG services ❚ exercise stress-testing ❚ two-dimensional ECHG ❚ 24-hour arrhythmia and blood pressure monitoring. These specialised facilities require adequate space and highly qualified technical staff with the appropriate equipment. Work to maintain and improve the quality of care Leadership role and the introduction of service developments Improving the quality of care requires integrated care pathways to be effective within the tertiary unit as well as within secondary care units. Service development requires working with NICE guidelines for some of the procedures and a MDT approach. Paediatric cardiologists must take a lead role in service development and exercise their team working and leadership skills. Other work will involve duties in clinical governance, professional self-regulation, continuing professional development (CPD), education and training of other doctors and other staff in the department. Many consultants may undertake research work or management duties. All of these require the participation of consultants. Education and training Consultants paediatric cardiologists will be involved in training undergraduate students, senior house officers (SHOs) and specialist registrars (SpRs). The training programme for SpRs in paediatric cardiology is defined by a curriculum and requires competency assessments. It is organised by the specialty training committees of the deaneries. Paediatric cardiologists have an increasingly important role in the appraisal, assessment and mentoring of SpRs and other professionals to develop a highly competent team of healthcare workers. Continuing professional development Continuing professional development for paediatric cardiologists is regulated by the College. 243
  9. 9. CONSULTANT PHYSICIANS WORKING WITH PATIENTS Management duties Paediatric cardiologists will be involved in local management as lead clinician or by undertaking other managerial work within each trust. Regional and national duties Paediatric cardiologists will have a role in the specialist training committees of the local deaneries. The National Society and the BPCA encourage involvement in educational, managerial and manpower negotiation. There are regional specialty advisers in paediatric cardiology who represent the College and deal with issues related to reviewing job descriptions of new consultant posts. The Joint Committee of Higher Medical Training (JCHMT), through the SAC, deals with issues related to the curriculum and training of SpRs in paediatric cardiology. Paediatric cardiologists are represented on the SAC. ACADEMIC PAEDIATRIC CARDIOLOGY The role of the paediatric cardiologist in academic paediatric cardiology varies according to the setting. There are very few pure academic paediatric cardiologists as most are clinically based. Paediatric cardiologists are committed to teaching undergraduate students, and are involved in teaching the whole of the tertiary and secondary care centre teams. In the tertiary centre, the consultant may lead MDTs in clinical research. WORKFORCE REQUIREMENTS FOR PAEDIATRIC CARDIOLOGY The previous estimate indicated that there should be one paediatric cardiologist per million population.4 The joint report of the British Cardiac Society and the Royal College of Physicians has recommended that there should be one paediatric cardiologist per 500,000 population.2 The most recent Census showed that there were only 68 paediatric cardiologists in the UK.5 Thus, the target of almost doubling the current consultant manpower will take a long time to achieve. It is possible that a shortened training curriculum combined with an increase in the numbers of SpRs and consultant posts would go some way towards achieving this target in a shorter period of time. 244
  10. 10. PART 2 ■ Paediatric cardiology CONSULTANT WORK PROGRAMME/SPECIMEN JOB PLAN Consultant paediatric cardiologists work in a variety of different clinical settings and possess a wide range of clinical skills. The job plan which follows can be regarded as general guidance. Programmed activities Activity Workload (PAs) Direct clinical care PICU ward rounds 1 Inpatient care plus referrals 1 Oupatient clinics 2–3 Specialised investigative or therapeutic procedures 2–3 Outreach clinics 2–3 Total number of direct clinical care PAs 7.5–8 on average Supporting professional activities (SPA) Work to maintain and improve Education and training, appraisal, departmental 2–3 on average the quality of healthcare* management and service development, audit and clinical governance, CPD and revalidation, research Other NHS responsibilities eg medical director/clinical director/lead Local agreement consultant in specialty/clinical tutor with trust External duties eg work for deaneries/Royal Colleges/specialist Local agreement societies/Department of Health or other with trust government bodies etc *Within the team of paediatric cardiologists, any individual would expect to devote 2–4 PAs to a selection from the following activities: ❚ lead clinician ❚ audit ❚ structured specialist training ❚ general management ❚ clinical governance and risk management ❚ roles in the deanery, the BPCA and the College ❚ membership of national subspecialty groups promoting quality issues in clinical care ❚ IT – collecting reliable data in relation to clinical activities ❚ cardiac networks. 245
  11. 11. CONSULTANT PHYSICIANS WORKING WITH PATIENTS References 1. Department of Health. The report of the public inquiry into children’s heart surgery at the Bristol Royal Infirmary 1984- 1995: learning from Bristol (Cm 5207(I)). London: DH, 2001. 2. Fifth report on the provision of services for patients with heart disease. Heart 2002;88(Suppl 3):iii1–56. 3. Department of Health. Report of the paediatric and congenital cardiac services review group, December 2003. 4. Provision of services for the diagnosis and treatment of heart disease. Fourth report of a Joint Cardiology Committee of the Royal College of Physicians of London and the Royal College of Surgeons of London. Br Heart J 1992;67(1):106–16. 5. Federation of the Royal College of Physicians. Census of Consultant Physicians in the UK, 2003. Data and Commentary. London: Federation of the Royal College of Physicians, 2003. 246