Evaluation of the British Heart Foundation Arrhythmia Care Co-ordinator Services Executive summary OUTSIDE COVER Five key points you need to know about setting up ACC services as part of the multi-professional 105mm flap arrhythmia team DO NOT print cutter guide 1 A multi-disciplinary steering group needs to be in place to support ACCs, in order to provide a successful arrhythmia service and to ensure local support. It is recognised as beneficial if ACCs have a structured induction period, which ideally should include time spent in primary care. 2 Timetabled regular consultant cardiology supervision, alongside committed management support, is key to the success of the ACC service. This is particularly important for those working in district general hospitals or primary care trusts. 3 The infrastructure associated with an ACC post needs to be in place prior to the appointment of the ACC. This should include office space and clinic space along with IT and admin support. 4 ACCs are a highly skilled resource for healthcare trusts and may have a greater impact if freed from more routine clinical and administrative activities. 5 ACCs should contribute to routine clinical audit data collection in order demonstrate the value of their post. Evaluation of the British Heart Foundation Arrhythmia Care Co-ordinator Services Executive summary April 2010 Dr. Hanif Ismail Professor Bob Lewin British Heart Foundation Care and Education Research Group Forew0rd Arrhythmias, or irregular heartbeats, range in their severity from causing minor inconvenience or discomfort to precipitating sudden death. Symptoms of arrhythmia include palpitations, dizziness or blackouts. Arrhythmias are very common, particularly among older people. They can have a profound effect on the quality of life and there is a good deal that the NHS can do to tackle them. In 2005 the Department of Health recommended that arrhythmia patients should have access to a named Arrhythmia Care Co-ordinator (ACC), and the British Heart Foundation (BHF) responded by funding 32 of these posts in 19 NHS Trusts across England and Wales. The ACCs were placed in primary, secondary and tertiary centres to provide an integrated care pathway for patients with arrhythmias. This report details an independent evaluation of the work of these nurses which was undertaken by researchers at the University of York. It confirms that the BHF ACCs have played a pivotal role in the NHS drive to improve the diagnosis, management and treatment of arrhythmia for the prevention of stroke and sudden cardiac death. It further demonstrates that our BHF ACCs have made substantial savings in re- admission and in increasing the throughput of patients seen. The BHF ACCs typify our approach to heart health. We have pioneered a new service, demonstrated its effectiveness and identified important issues that need to be considered when establishing effective services. It is now up to healthcare commissioners to recognise the value of these services and replicate the model across the UK, thereby ensuring all arrhythmia patients receive the same standard of care. Peter Weissberg Medical Director – British Heart Foundation 1 Background An arrhythmia is an abnormality of the heart’s rhythm. The heart may beat too slowly, too quickly or in an irregular way. The symptoms can include: palpitations, chest pain, fatigue, dizziness, breathlessness and loss of consciousness. In some cases, arrhythmia can cause sudden cardiac death. The symptoms can be very frightening and many patients and their families are acutely aware of the possibility of a sudden death. In some patients this can lead to a fearful and restricted lifestyle. For most people an arrhythmia is not life threatening and all that may be required is assessment followed by reassurance. Others will require treatment that may include medication, an invasive procedure such as catheter ablation, or the implantation of a device such as a pacemaker or an implanted cardiac defibrillator (ICD). For most of these more complex treatments regular follow-up is essential: for example, patients with pacemakers and ICDs need regular checks to ensure their device is functioning properly and those on drugs such as Warfarin need careful monitoring. All patients and their families have educational needs regarding their diagnosis and prognosis, treatment options, medications and how best to live with their condition. Some also need help with psychosocial problems, negotiating their way through the NHS and communicating with other physicians or employers. In 2005 the Department of Health added another chapter to the National Service Framework for Coronary Heart Disease (2000), Chapter Eight – Arrhythmia and Sudden Cardiac Death (SCD). This set out three quality requirements (Figure 1) and suggested that: “People with long-term conditions receive support in managing their illness from a named arrhythmia care co-ordinator” This person would act as the ‘key worker’ to assess the patients’ needs and ensure they received the best possible multi-disciplinary care. Quality Quality Quality Requirement One Requirement Two Requirement Three Patient support Diagnosis and Sudden treatment cardiac death People with arrhythmias receive People presenting with arrhythmias, When sudden cardiac death occurs, timely and high quality support in both emergency and elective NHS services have systems in place and information, based on an settings, receive timely assessment by to identify family members at risk and assessment of their needs. an appropriate clinician provide personally tailored, sensitive and to ensure accurate diagnosis and expert support, diagnosis, treatment, effective treatment and information and advice to rehabilitation. close relatives. Figure 1 Department of Health (2005) National Service Framework: Coronary Heart Disease – Chapter Eight: Arrhythmias and Sudden Cardiac Death. London: NHS 2 Executive Summary Evaluation of The BHF ACC Services After the publication of chapter eight, a working group was set up by the BHF and the Heart Team at the Department of Health (DOH) to further define the role of the ACC. An ACC Committee was set up by the DOH to advise and support ongoing work associated with the role of the ACC. Specialists in the field of arrhythmia sat on the panel and led on the development of national templates for an ‘ideal’ job description, person specifications, with an outline of the proposed role of the ACC. The role covered four domains: l Clinical activities l Educational activities for patients, carers and other healthcare professionals l Management and leadership l Audit and evaluation The release of chapter eight highlighted the need to increase the number of these arrhythmia specialists. In 2006, the BHF awarded funding to 32 ACCs in 19 NHS Trusts in England and Wales as part of a three year pilot project. The potential role for development and delivery of these new co-ordinated arrhythmia services is outlined in table 1. Table 1: Key objectives for improved arrhythmia care (DOH 2005) l That primary, secondary and tertiary care services work together l That service development is patient-led, and that patients and their families receive the information, treatment, care and ongoing support they need l That all those who are part of the care pathway including patients, families and carers, receive the education and training they need l That an effective holistic patient assessment process is in place l That ongoing monitoring and auditing of the joined up service takes place The BHF also funded an evaluation of the impact of these new posts. After a tendering process the BHF Care and Education Research Group at the University of York were awarded the contract and the following questions were addressed: l Mapping the work of the ACCs: who was appointed to these roles? How were services structured? Which patients did they see? l Did the ACCs meet the objectives set out in the model job description? l How did the ACCs perceive their role and what were the common barriers and facilitators in establishing their service? l How did patients perceive the ACCs’ role? l How did the physicians perceive the ACCs’ role? l Did the ACCs improve the patients’ health related quality of life? l Did the appointment of the ACCs help to reduce costs and hospital readmissions? 3 To answer these questions we used both quantitative and qualitative research methods. 4 Executive Summary Research methods Quantitative methods Audit ACCs were provided with an on-line database. It recorded patient demographics and clinical information, nursing process data such as the number of patient contacts and referrals to other healthcare professionals. For the BHF the ACCs also completed quarterly monitoring reports recording the number of face to face and telephone contacts with patients and the number of teaching sessions they delivered to patients and other medical staff. Some patients, for example those attending a routine clinic, were seen only briefly by the ACC. Others with more complex needs were seen over a period of weeks or months. The ACCs asked patients, whom they expected to see more than once, to fill in a questionnaire pack that included a questionnaire measuring anxiety and depression, the Hospital Anxiety and Depression Scale (HADS), the Dartmouth COOP quality of life scales and with the EQ5D a measure of health utility. Patients repeated this assessment four months later to measure any change. Surveys During the ACCs’ first year in post, and then a year later, they were asked to complete a questionnaire describing the activities they were engaged in. The items were taken from the roles set out in the Model Job Description. Diaries In their first year all ACCs were asked, for one week, to record their activities in a diary. This was to establish what proportion of their time they were spending in each aspect of their role and was also repeated a year later to see how this had changed. Readmission data We obtained Hospital Episode Statistics (HES) for the number of readmissions for arrhythmia for the year preceding the appointment of the ACCs (2005) and again in the final year of the study (2009) and compared this with all similar hospitals in England. Qualitative methods Eight centres were chosen using a framework designed to reflect the range of ACC placements (rural, large teaching hospital, tertiary centre). Interviews were conducted with the ACCs and separately a consultant cardiologist working in arrhythmia. The ACCs were asked about service delivery, referral patterns and caseloads and their integration into the multi-disciplinary team (MDT). The consultants were asked how the ACC had contributed to the work of the team and what, if any, improvements this had led to. To discover how the patients viewed the role of the ACC, interviews were conducted with 30 patients and 10 carers. A more detailed description of the research methods can be found in the full report which can be downloaded from www.bhf.org.uk/publications 5 6 1. Who was appointed to the BHF ACC roles? How was it structured and which patients did they see? Key findings There were 32 appointees and all were registered nurses; 11 at Grade 7 and 21 at Grade 6. Only three used the title of ACC, the others were given the title Arrhythmia Nurse Specialist by their employers, this was also the title preferred by the appointees. The majority of the ACCs (76%) had previously worked in a coronary care unit or a cardiology ward environment, 15% had previously worked in primary care and 9% had previously worked in cardiology labs. Where were the ACCs based? The BHF invited bids from all over England and Wales. Half of the appointees were based in Greater London. Of the remainder, Wales had four, the South West region six, the Midlands four and the North West two. Nine sites were awarded funding for a single ACC, eight for two, one for three and one for four ACCs. Awards were made to 11 large teaching hospitals, eight district general hospitals, two cardiology networks and three tertiary centres. Eighteen ACCs were based in secondary or tertiary care and 14 were positioned between the secondary and primary sectors. An established arrhythmia service was already in place in 13 of the 19 sites prior to the BHF funding. The arrhythmia services ranged in size and complexity from one or two people, typically a cardiologist and electro-physiologist, to specialist tertiary centres with a MDT and several cardiologists. In the tertiary centres there were an average of three cardiologists; services included: a paediatric service (42%), a grown-up congenital heart disease clinic (47%), an end of life or palliative care service (74%) or a sudden cardiac death service (42%). Which patients did the ACCs see? The most common referrals were for atrial fibrillation (37%) and palpitations (15%). More than half were male (61%) with an average age of 65 years, 86% were white British and 53% were married. The quarterly returns collected by the BHF revealed that over the three years of the evaluation, the ACCs saw a total of 25,526 patients predominantly in nurse-led or alongside consultant-led clinics. Of these, 18,180 were new patients and 7,346 patients were seen more than once. The ACCs made or received 26,372 phone calls with patients and undertook 2,105 face to face educational sessions. Our audit recorded that 60% of referrals to the ACCs were made by consultant cardiologists and 15% by GPs. 7