VOL: 98, ISSUE: 10, PAGE NO: 41
JACKIE HILL, PhD, MPhil, RGN, FRCN, Senior Lecturer in Rheumatological Nursing, Academic Unit of Musculoskeletal Nursing, Rheumatology & Rehabilitation Research Unit, Chapel Allerton Hospital, LeedsNAOMI REAY, BSc, CHCN, RSCN, RGN, SRCh, Clinical Nurse Specialist in Raynaud’s and Scleroderma, Rheumatology & Rehabilitation Research Unit, Chapel Allerton Hospital, Leeds
Sponsored by Pfizer
The term rheumatic diseases describes over 200 diverse conditions that can affect the bones, joints, and synovial tissues. Associated malfunction of the immune system gives rise to autoimmune diseases and when this occurs there is potential organ involvement, including that of the skin.
The term rheumatic diseases describes over 200 diverse conditions that can affect the bones, joints, and synovial tissues. Associated malfunction of the immune system gives rise to autoimmune diseases and when this occurs there is potential organ involvement, including that of the skin. Rheumatic illnesses are the most frequently self-reported long-standing conditions in the UK, with an incidence of 80 per 1,000 adult women, and 40 per 1,000 adult men (OPCS, 1989). About 20% of the population experience painful joints, with 13% suffering from painful feet in any given month (Blaxter, 1990) (Fig 1). Rheumatic diseases and their associated problems account for 18.7% of all GP consultations (Symmons and Bankhead, 1994). Many complex rheumatic diseases are chronic but, as yet, incurable. The primary symptom tends to be pain; other symptoms may include joint swelling, stiffness and fatigue, often compounded by feelings of illness, malaise, anxiety and depression. In conditions such as rheumatoid arthritis and osteoarthritis, the underlying disease processes may lead to joint disorganisation or destruction. This will result in loss of functional ability, deficits in self-care and loss of self-esteem. The management of such multifaceted illnesses requires a complex regimen of drug therapy and the skills of a multidisciplinary team, in which the nurse plays a pivotal role. The ethos of care is underpinned by the principle of self-management. Think Point: A 52-year-old man has severe osteoarthritis of the hip. Write a list of members of the multidisciplinary team who may be needed to manage his care. How can they help? Financial costs
In the UK, the total annual cost of rheumatoid arthritis alone has been estimated to exceed 1bn (McIntosh, 1996). For patients and their families the toll can be awesome. For instance, patients with unremitting disease may find it impossible to remain in paid employment. The end of financial independence can have far-ranging financial and psychological effects, not only on patients, but also on their family. They may need to move house, forgo family treats and reduce their standard of living. Those entitled to benefits may find applying for them both stressful and degrading but the extra income can make life changes more bearable. Having a rheumatic disease may also be a problem when applying for a mortgage, insurance (life, house, travel). If accepted, premiums are often higher and the cover is less comprehensive than for healthy people, even when provided by specialist firms. Established drug therapy, modern management
One way to reduce both the social and individual burden of rheumatic illness is to minimise the risk of progression to the stage of disability. Changes in drug management over the past decade have produced great benefits to patients with rheumatoid arthritis. Traditionally, drug therapy was a sequential progression from non-steroidal anti-inflammatory drugs (NSAIDs) to disease-modifying antirheumatic drugs (DMARDs). This was because DMARDs are potentially toxic, so their introduction was usually withheld until the disease was at a more severe stage. However, as research evidence on the effectiveness of DMARDs grew, and confidence in monitoring systems was established, prescribing strategies were turned on their head. Modern management aims to prevent structural damage by reducing disease activity as soon and as effectively as possible. DMARDs are now given at an early stage of the disease, often in combination: for instance, methotrexate and sulphasalazine are a potent combination. Corticosteroids are frequently used concurrently, acting as a bridge while the DMARDs - that are slow to act - begin to take effect (Woolfe and Van Riel, 1997). Success depends on early diagnosis and, as rheumatoid arthritis has no specific clinical, radiological or immunological features, diagnosis is difficult (Emery and Symmons, 1997). This problem has been addressed by the introduction of special outpatient clinics in some areas of the country. Leeds Early Arthritis Project (LEAP) One such clinic is held at Leeds General Infirmary. It offers patients with suspected inflammatory arthritis early access to services and aims to ensure: - Early diagnosis - Best possible treatments - Better patient outcome. A rheumatologist sees the patient within two to four weeks of referral and undertakes a full physical, biochemical and functional assessment. Results are assessed, and within five weeks of their first consultation patients are given a positive diagnosis and treatment is begun. This rapid initiation of drug therapy is thought to be the key to preventing disability (Emery, 1994). Think Point: What are the clinical symptoms of rheumatoid arthritis and what tests may be necessary to confirm a diagnosis? New drug treatments
A number of new drugs, which work as biological agents, DMARDs, NSAIDs or analgesics, can be administered. Biologic agents The majority of DMARDs used in rheumatoid arthritis were developed for other diseases such as tuberculosis (intramuscular gold), Wilson’s disease (d-penicillamine) and malaria (chloroquine). New drugs are based on knowledge of the pathogenesis of rheumatoid arthritis. Cytokines have been identified as major mediators of immune and inflammatory function (Brennan et al., 1992). The cytokines tumour necrosis factor-alpha (TNF-a) and interleukin-1 (IL-1) have been shown to play a pivotal role. Interleukin-1, derived from synovial membranes, was the first cytokine to be shown to promote cartilage degradation in test-tube experiments (Fell and Jubb, 1977). Drugs that inhibit the biological action of IL-1 have taken longer to develop than those affecting TNF-a but the first, Anakinra, given by daily injection, has recently been given a product licence in the USA and is expected to be available in the UK in the near future. TNF-a It is postulated that if the action of TNF-a can be blocked, the progression of the disease can be slowed. Agents that target TNF-a are called anti-TNFs, and two drugs are available: etanercept (Enbrel) and infliximab (Remicade). Each works a different way. TNF-a normally binds to receptors on specific cells. Soluble proteins in etanercept mimic the TNF-a receptor, the TNF-a binds to the mimic and so is removed from circulation. The second method is to produce antibodies that work against TNF-a, which is how infliximab works. This drug is a monoclonal antibody to TNF-a, made by combining a human immunoglobulin with a binding region produced in mice (Miller, 2001). Etanercept 25mg is given to patients by subcutaneous injection twice weekly and, apart from local irritation at the injection site, it appears to have few side-effects. Patients can be taught to self-inject, which can reduce costs to the NHS. It can be given alone or in conjunction with other DMARDs such as methotrexate. Infliximab is administered by infusion and can be combined with methotrexate. Reported side-effects include hypersensitivity reactions, hypotension, fever, dyspnoea and urticaria (Miller, 2001). Both these drugs are immune suppressants and should be avoided in patients susceptible to infections, or stopped should an infection develop. Biologic agents appear to be highly effective, described in a British Society of Rheumatology news release as a lifeline for those in whom other treatments have failed. However, the long-term effects are unknown. As the name implies, TNF plays an important role in the suppression of tumours but it is not known whether depletion will predispose patients to cancer. TNF-a is thought to be implicated in a number of rheumatic diseases and research is ongoing (Breedveld, 1998). Access to anti-TNF-a Although many people with severe rheumatoid arthritis appear to benefit from these new biologic agents, health authorities are limiting access to them owing to costs, which can be 6,000-8,000 per patient a year. There is evidence that those with rheumatoid arthritis can be the victims of so-called postcode prescribing. A survey by the British Society of Rheumatology found that 80% of 135 rheumatologists who responded could not obtain proper funding for these drugs. More than 53% could get no funding from health authorities and 28% said there was insufficient funding (BSR, 2001). In response to the results of the survey, the national charity Arthritis Care has set up an Access to Treatments Campaign, and its helpline has received many calls from people with severe rheumatoid arthritis desperate to find out how they can access these drugs. The organisation suggests a step approach (Box 1). Anti-TNF treatments have been available in the UK for nearly two years, and the National Institute for Clinical Excellence (NICE) is expected to endorse their use in the next few months. DMARDS Leflunomide Leflunomide (Arava) acts as a DMARD in rheumatoid arthritis. It is an antimetabolite that reduces the number of circulating T-lymphocytes. It is administered orally and has a long half-life (about two weeks), which is relatively slow to work. Treatment starts with a loading dose of 100mg daily for the first three days, followed by a maintenance dose of 20mg daily, or 10mg daily if it is poorly tolerated by the patient. At these doses the benefits start to become evident after about four weeks. Studies on leflunomide have demonstrated its efficacy (Dunn and Small, 1999) but its side-effects, which include diarrhoea, rash and reversible alopecia, require monitoring. Liver enzymes are known to increase in about 10% of patients with the use of this agent (Miller, 2001). The European Agency for the Evaluation of Medicinal Products issued a public statement last year regarding reports of serious hepatic reactions in patients taking leflunomide: 296 hepatic reactions occurred (for an estimated 104,000 patient years), of which nine were fatal and almost half deemed to be serious. Monitoring should therefore include a minimum of monthly liver function tests for the first six months of treatment, and every eight weeks thereafter. Think Point: A patient has just started taking leflunomide as a DMARD. How will you know it is working as a DMARD rather than as an NSAID? NSAIDS Cyclo-oxygenase-2 selective inhibitors NSAIDs are commonly used to treat many rheumatic diseases, and in 1999 an estimated 18.5 million were prescribed (NICE, 2001). However, gastrointestinal side-effects, ranging from mild dyspepsia to severe gastric haemorrhage and perforation, are common. NICE estimates that 2,000 deaths a year are the result of NSAIDs prescribed for arthritis (NICE, 2001); a further 12,000 patients on NSAIDs are hospitalised (Arthritis Today, 2001). Prostaglandins cause the detrimental inflammatory response in arthritis, but some are beneficial and protect the gastric mucosa. NSAIDs reduce the production of prostaglandins by inhibiting the action of cyclo-oxygenase (COX). In 1990, research discovered two forms of this - COX-1 and COX-2. The first is responsible for the prostaglandins essential for maintaining normal endocrine function, renal function, haemostasis and mucosal integrity. The inhibition of COX-1 is thought to be the primary cause of the gastrointestinal adverse effects of traditional NSAIDs. While traditional NSAIDs cannot discriminate between COX-1 and COX-2, the newer ones inhibit COX-2 and spare COX-1. Hence their title - selective COX-2 inhibitors. In 2001, NICE (2001) issued guidance on the use of COX-2 inhibitors for treating osteoarthritis and rheumatoid arthritis. This states that: - All NSAIDs are associated with adverse events and should be prescribed only in cases where there is a demonstrable clinical need - Long-term use of NSAIDs without appropriate monitoring and re-evaluation should be avoided - COX-2 inhibitors are not recommended for regular use in patients with rheumatoid arthritis or osteoarthritis. They should be used in preference to standard NSAIDs in those at high risk of developing serious gastrointestinal side-effects (Box 2) - There is no evidence to justify the simultaneous prescribing of gastroprotective agents with COX-2 drugs to reduce further the risk of gastrointestinal side-effects. Supplements with an analgesic effect Glucosamine is a highly popular supplement available in many health shops and pharmacies but not available on UK prescription. It is a hexosamine sugar used as a building block for glycosaminoglycams that make up cartilage (Miller, 2001). For several years, patients have reported that the use of glucosamine reduces pain in osteoarthritis. Recent research appears to confirm this (Reginster et al., 2001). The study showed that 1500mg glucosamine sulphate prescribed daily reduced pain and disability, and X-rays showed reduced bone deterioration. Further research is under way. Nurse-led services
The NHS Plan (DoH, 2000) has set formidable targets for patient waiting times, and the government clearly expects nurses to contribute to achieving these. To facilitate this, the chief nursing officer (Mullally, 2001) has set out 10 key roles for nurses (Box 3), many of which are already incorporated in established nurse-led rheumatology nursing clinics (Ryan, 1997). Clinical effectiveness (Hill et al., 1994) and patient satisfaction (Hill, 1997) have already been assessed. A further study funded by the Arthritis Research Campaign (ARC) found that patients with rheumatoid arthritis or osteoarthritis who attended a nurse-led rheumatology clinic were managed effectively and safely (Hill, 2002). Patients gained additional benefits in the form of patient education, enhancing their ability to self-care. Furthermore, patients reported high levels of satisfaction with the care they received from the rheumatology nurse. Rheumatology nursing has also benefited from the consultant nurse initiative, and two consultant rheumatology nurses are now in post. Think Point: Undertake a literature search on nurse-led clinics. How do nurse-led clinics in rheumatology compare with those in other specialties? Government initiatives
The political will to provide evidence-based health care in a patient-centred NHS is a key factor in developing clinical practice. This fits well with the ethos of care in rheumatology. The New NHS: Modern, Dependable (DoH, 1997) sets out the drive towards clinical governance and places heavy emphasis on the quality of care. An important step has been the establishment of the National Institute for Clinical Excellence, which seeks to evaluate clinical care in order to recommend optimum care for specific conditions. The NHS Plan (DoH, 2000) is about investment and reform, and one of its stated aims is to correct the lack of national standards in the NHS. This should make the provision of care more equitable by establishing best practice. Other key initiatives are the national service frameworks. Although there is currently no specific framework for rheumatology, the NSF for Older People sets out eight national standards aimed at improving health and social care of the UK’s growing elderly population. Standard 6 addresses falls, and outlines measures to minimise their consequences by preventing osteoporosis and treating those at high risk (Abdy, 2001). Campaigning is under way to ensure that musculoskeletal conditions are included in the second wave of work on NSFs for older people. The role of charities
Charities play a prominent role by funding research and some specialist patient services. For instance, Lupus UK pays the salaries of some specialist systemic lupus erythematosus nurses, and the Raynaud’s and Scleroderma Association funds specialist nurses for patients with systemic sclerosis. The ARC and the patient organisation Arthritis Care provide a wide range of literature. The ARC supports clinical practice by providing funding for research and educational bursaries. Bursaries are also available for attending conferences at home and abroad. Dissemination of research findings is considered key to the uptake of evidence-based practice. The ARC has also funded two very important initiatives: - An Allied Health Professional Working Party was set up to define the extended clinical role of allied health professionals in rheumatology. It has raised the profile of non-medical health professionals within the ARC and produced a document that places rheumatology at the forefront of clinical specialisation, particularly in nursing (ARC, 2001) - The funding of five academic posts for non-medical health professionals to stimulate interest and produce high-quality research. Although there is substantial research on drug therapy for rheumatic diseases, there is a paucity of research into other therapeutic interventions, particularly nursing. The ARC initiative will help rectify this anomaly. Three of the posts have been awarded to nurses. A senior lectureship was awarded to Jackie Hill at the Rheumatology and Rehabilitation Research Unit (RRRU) of Leeds University. This post is central to the development of an Academic and Clinical Unit of Musculoskeletal Nursing (ACUMN), a tripartite collaboration between the RRRU, the Leeds Teaching Hospitals Trust, and the School of Healthcare Studies at the University of Leeds. The aim of the unit is to integrate education, research and practice in musculoskeletal nursing. Nurse education is central to good clinical practice and course modules are being developed. Collaborations for the establishment of a practice development unit are also under way within the musculoskeletal unit. Management of medication
Management of medication is prominent in the role of many specialist nurses, who often have to deal with side-effects and alterations to drug r駩mes through local arrangements with physicians. The nurse is often the patient’s first point of contact through telephone helplines or outpatient clinics. Conclusion
Rheumatology is a complex, vibrant and fast-growing specialty, and nurses who work in it must master a gamut of skills. Enabling patients to maximise their potential involves an understanding of their physical, psychological and social needs, and requires proficiency in assessment, diverse manual and technical skills, and a knowledge of patient education. These are exciting times to be nursing in the specialty, as many developments are emerging in the form of new drug treatments and nursing initiatives. This can only bode well for the future of rheumatology nursing and those who work in it. - Next (April 11): Management of medicines USEFUL ADDRESSES
Arthritis Care 18 Stephenson Way, London NW1 2HD. Arthritis Research Campaign Copeman House, St Mary’s Court, St Mary’s Gate, Chesterfield, Derbyshire S41 7TD. British Health Professionals in Rheumatology 41 Eagle Street, London WC1R 4TL. British League Against Rheumatism 41 Eagle Street, London WC1R 4TL. British Society of Rheumatology 41 Eagle Street, London WC1R 4TL. Department of Health PO Box 777, London SE1 6XH. Website: www.doh.gov.uk/publications/point.html Lupus UK Queens Court, 1 Eastern Road, Romford, Essex RM1 3NH. National Rheumatoid Arthritis Society Briarwood House, 11 College Avenue, Maidenhead, Berkshire SL6 6AR. Raynaud’s and Scleroderma Association 112 Crewe Road, Alsager, Cheshire ST7 2JA. RCN Rheumatology Nursing Forum 20 Cavendish Square, London W1G 0RN.