Rheumatology Advance Access originally published online on January 25, 2007
Rheumatology 2007 46(3):379-381; doi:10.1093/rheumatology/kel431
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EDITORIALS |
Rheumatology nurse specialists—do we need them?
ACUMeN, University of Leeds, 2nd Floor, Chapel Allerton Hospital, Leeds, LS7 4SA, UK.
Correspondence to: Dr. J. Hill. E-mail: j.hill{at}leeds.ac.uk
At a recent demonstration by health care staff in Leeds, the banner held by three specialist rheumatology nurses read ‘People with arthritis need staff who understand it – cuts are causing chaos’. So what has happened that has caused these normally calm and hardworking nurses to protest so vociferously? As is the case with many specialist nurses, their posts are under threat. This is rather perverse, given that the Musculoskeletal Services Framework, recently published by the Department of Health, specifically mentions that specialist nurses/practitioners are necessary to run monitoring clinics and provide patient education and support to enhance self-management [1]. The heart of the problem is the funding deficit, as hard pressed Trusts struggle to comply with government instructions to balance their books. Simultaneously, job evaluations and pay awards emanating from the Agenda for Change (AfC) [2] are being implemented. AfC is timely for Trusts as it has precipitated a review of roles and bandings, and specialist nurses’/practitioners’ posts have been identified as potential areas for cost savings; cutting posts not only reduces the wage bill but also helps to resolve some of the huge pensions deficits. So are Trusts right to target these posts? What is the contribution of rheumatology nurse specialists/practitioners that is so important that their posts should be protected? In other words do we need them and should we keep them?
To answer these questions adequately, it is necessary to describe the role of rheumatology nurse specialists/practitioners and assess the evidence for their effectiveness. As no distinction is made between the functions of nurse specialist and nurse practitioner within rheumatology nursing, the term rheumatology nurse specialist (RNS) will be used.
Publications about the role of United Kingdom RNS started to appear in the early 1980s. Nurses in Leeds who were undertaking clinical drugs trials began taking responsibility for a wider area of patient management. This was because patients who had completed their trials and had been returned to the general rheumatology clinics, began seeking further consultations with the nurses [3, 4]. It was decided that nurse-led clinics would run alongside a rheumatologist's clinic, and that the nurses would manage stable patients and provide education, advice and support for more difficult cases. A small-scale evaluation showed that patients valued this experience [5]. During the 1980s and 1990s, more rheumatology centres employed RNS and by 1992, a nationwide survey returned by 51 respondents identified their main functions to be drug monitoring (96%), education of staff (96%), patient education and counselling (86%) [6]. Almost a decade later, the role had developed to encompass a broad spectrum of activities that still included the original components, with the addition of patient assessments, intra-articular injections, recommendation of changes to drug therapies, referral to other health professionals and hospital admission of patients [7–9]. The RNS were also innovative in other areas. Because of the chronicity of their disease, patients, their carers and other professionals, often need access to professional rheumatology advice. As a result, many RNS set up telephone advice lines [10] and this service is now seen as an integral component of service provision. The RNS also realized that the provision of such a service raised specific training issues [11], and recently the Royal College of Nursing Rheumatology Forum has produced a guidance document for nursing practitioners [12]. Other groundbreaking ideas have occurred in the field of telemedicine. In an attempt to reduce time and costs, rheumatologists paved the way by assessing out-patient follow-up by telephone [13, 14], and nurse-led telephone clinics have followed. A limited audit of one such clinic has demonstrated benefits to patients and the rheumatology service as a whole [15]. RNS have also been at the forefront of change in other respects. A successful patient-initiated out-patient follow-up scheme, accessed by a nurse-led telephone helpline has evaluated well [16]. This concept, which puts the patient at the helm, reflects the government and NHS commitment to the ‘expert patient’ [17]. The most recent additional activity has been that of prescribing [18]. Nurse prescribing was first advocated in 1986 [19] and recommendations as to who and what could be prescribed soon followed [20]. Although RNS prescribing is at present in its infancy, numbers will inevitably increase as more rheumatology nurses undertake the specialist training. In addition to this increase in practice activities, rheumatology teams and their patients highlighted the need for further specialization, and so RNS following the medical model, have begun to subspecialize. There are now dedicated nurse specialists working in scleroderma, systemic lupus erythematosus, rheumatoid arthritis (RA), paediatric rheumatology and biological therapies.
Having stated what RNS do and how they have expanded their role, it is important to assess how effectively they practice. There is convincing evidence as to the benefits to patient outcomes from RNS clinics. The RCT is the most rigorous methodology used, and there have been six studies undertaken to date; two from the Netherlands [21, 22] and four from the UK [23–26]. The Dutch team also undertook an economic evaluation [27].
The first Dutch study [21] was a six centre trial of 210 RA patients who had experienced increasing difficulty in performing activities of living over the previous 6 weeks. Patients were randomly allocated to three equal groups, receiving care from either (i) an in-patient team, (ii) a day patient team based at Leiden University Medical Centre or (iii) one of six clinical nurse specialists (CNS). Patients were assessed on study entry and at weeks 6, 12, 26 and 52. Visits for care were not standardized and the average duration of care from the six CNS was 12 weeks, the mean number of visits was three. In-patient and day patient care both comprised nine full treatment days. Results demonstrated significant improvement in all three groups in the two primary outcome measures of HAQ and MACTAR (P < 0.05). The DAS and the RAQoL also improved over time (P < 0.05). Subgroup analysis demonstrated that age had a significant impact on function. With increasing age, the most favourable outcome shifted from CNS and in-patient care to day care (P < 0.001). Patients attending the CNS clinic were slightly less satisfied than patients receiving in-patient or day patient care and the authors cite the intensity of in-patient and day patient care as a possible reason. The second Dutch study [22] was a follow up at 104 weeks, comprising a single assessment by two independent assessors to evaluate long-term effectiveness. The results from the 52-week study remained stable until 104 weeks. It was concluded that the addition of nursing care by CNS provided similar long-term clinical outcomes to that from day and in-patient care. The results from these studies were then used to assess the relative cost effectiveness of the three modes of care [27].
Compared with in-patient and day patient team care, CNS care demonstrated equivalent quality of life and utility, at a lower cost.
The UK studies have involved patients with RA [23, 24, 26] and osteoarthritis (OA) [25]. In study one [23], 70 RA patients were randomly allocated to either RNS clinic or a consultant rheumatologist (CR) clinic and seen on six occasions over 12 months. On study entry, the groups were well matched, and by week 48 both groups showed significant improvements in disease activity (plasma viscosity and articular index). However, a comparison of other variables demonstrated significant differences between groups. Compared with the CR cohort, the RNS group had significantly less pain (P < 0.05), had acquired greater levels of knowledge (P < 0.0001) and was significantly more satisfied with care (P < 0.0001). Over the 21 months of the study, the RNS had a default rate of 1.8% compared with 16.4% for the CR. One reason for this may have been that the CR saw on average twice as many patients per session (n = 17.8) than the RNS (n = 8.3), and so the RNS could spend approximately twice as long with patients. Another marked difference was that the RNS had a higher referral rate to other members of the multidisciplinary team. The second study [24] replicated the design of the previous study, but the comparator group comprised junior hospital doctor (JHD) clinics. The results broadly replicated the first study, pain and fatigue decreased, and knowledge and satisfaction all increased in the RNS group, but remained stable in the JHD cohort. Differences in patterns of referral were again evident. The third study [25] was of similar design, but the patients had OA and there were only four clinic visits. Results demonstrated several significant differences between the RNS and JHD cohorts on study completion. Compared with the JHD cohort, RNS patients had significantly better function (P < 0.05 weeks 32 and 48), and pain and morning stiffness were significantly improved (pain P < 0.02; morning stiffness P < 0.05). RNS patients showed a significant increase in overall knowledge of their disease (P < 0.001) and significantly greater knowledge of disease process and treatments (P = 0.005) compared with the JHD cohort. The RNS patients also exhibited significant increases in self efficacy; the patient's belief that they could reduce their pain (P = 0.005) and manage their disease (P = 0.05). By study completion, the RNS patients were significantly more satisfied than their JHD counterparts (P < 0.001), whose satisfaction remained stable.
The final RCT [26] is an important study as it tested the hypothesis that consultation with a CNS in a drug monitoring clinic, an activity that almost all RNS undertake, has a measurable impact on the well-being of patients with RA. The patients were randomized to the care of a CNS or an out-patient staff nurse (control group). The latter supported the rheumatologist at two clinics each week administering gold injections and assisting with intra-articular injections. All patients were given a 10 min appointment and data were collected at entry and at 3, 7 and 12 months. The primary outcome measures, the Arthritis Impact Measurement Scales and the Rheumatology Attitude Index, both improved significantly more in the CNS than the control group. The authors conclude that a nurse with expert knowledge adds value by improving patients’ perceived ability to cope with their arthritis.
So what do we conclude from all this? It seems that RNS have responded to both the needs of rheumatology patients and the needs of the service and they do not appear to be afraid of adapting and expanding their roles to meet these needs. However, the world in which we live is changing rapidly and RNS may well have to change the way they deliver care and the place from which it is delivered. One way in which RNS can contribute to the former, is to assess their practice regarding the number of out-patient appointments they manage. A reduction in unnecessary out-patient appointments, follow-ups and DNAs is cited in a recent document as an activity that could substantially reduce costs [28]. The patient-initiated model of follow-up [16] could also be used to good effect here. The evidence to date as to the effectiveness of the RNS is limited but compelling, and this is reflected in documents such as the ARMA Standards of Care [29]. Patient organizations such as Arthritis Care and the National Rheumatoid Arthritis Society are also very supportive. In the light of this, it is disturbing to read a recent Department of Health document describing the vision for modernizing nursing careers [30]. It states that nursing should be coming from ‘increasing specialization and subspecialization’ and going towards ‘better balance of generalists and specialists to provide integrated networks of urgent, specialist and continuing care’. The implication here is that in nursing, specialization is counter-productive. If so, nursing must surely be the only profession where this holds true. RNS do need to assess their workloads carefully and ascertain how they can input onto these integrated networks, but this must not be done at the cost of RNS roles. The knowledge and skills required by an RNS take years to acquire, and it has been demonstrated that they are of great benefit to patients and central to the operation of the multidisciplinary team.
Perhaps the question that we should ask is not do we need RNS but rather what would patients, multidisciplinary teams and the service do without them?
The author has declared no conflict of interest.
References
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- Van Der Hout WB, Tijhuis GJ, Hazes JMW, et al. (2003) Cost effectiveness and cost utility analysis of multidisciplinary team care in patients with rheumatoid arthritis: a randomised comparison of clinical nurse specialist care, inpatient team care, and day patient team care. Ann Rheum Dis 62:308–15.
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