The value, impact and role of nurses in rheumatology outpatient care: Critical review of the literature

Background: As rheumatology nurses make substantial contributions to intensive management programmes following ‘ treat to target ’ principles of people with rheumatoid arthritis (RA), there is a need to understand the impacts of their involvement. A structured literature review was undertaken of qualitative studies, clinical trials and observational studies to assess the impacts of rheumatology nurses on clinical outcomes and the experiences of patients with RA and to examine the skills and training of the nurses involved. Method: A structured literature review was conducted to examine the value, impact and professional role of nurses in RA management. Results: The literature search identified 657 publications, and 20 of them were included comprising: seven qualitative studies (242 patients), nine trials (a total of 2,440 patients) and four observational studies (1,234 patients). In clinical trials, nurses achieved similar patient clinical outcomes to doctors, and nurses also enhanced patients' satisfaction of received care and self-efficacy. In the qualitative studies reviewed, the nurses increased patients' knowledge and promoted their self-manage-ment. The observational studies studied examined found that nursing care led to improved patients' global functioning. The nurses in the various studies had a wide range of titles, experiences and training. Discussion: Our structured literature review provides strong evidence that rheumatology nurses are effective in delivering care for RA patients. However, their titles, experience and training were highly variable. Conclusion: There is a convincing case to maintain and extend the role of nurses in managing RA, but further work is needed on standardisation of their titles and training.


| INTRODUCTION
The current care of people with rheumatoid arthritis (RA) focuses on providing intensive management programmes, which follow the general principles of 'treat to target' strategies. Following these strategies means seeing and assessing patients frequently following diagnosis and after starting treatment, with ongoing discussions about care between clinicians and patients. Treat to target approaches are recommended in English and European specialist guidance (Goswami et al., 2016;National Institute for Health and Clinical Excellence, 2018;Schoels et al., 2010;Smolen et al., 2010;Smolen et al., 2016;Stoffer et al., 2016).
The increasing use of treat to target strategies impacts on the role of rheumatology nurses, who are often involved in assessing patients and supporting them whilst they receive intensive treatment. Nurses often have key roles in treat to target, the basis of which has been summarised by Burmester and Pope (2017) as 'rapid treatment, reassessment, and adjustment of medications to a target of remission wherever possible.' The TITRATE trial (Martin et al., 2017) has evaluated intensive treatment combined with monthly assessment and management sessions by rheumatology nurses.
One challenge when involving rheumatology nurses in intensive management strategies in both research settings and in routine clinical practice is determining exactly what constitutes a specialist nurse.
Unlike rheumatologists, who have well-defined training requirements and recognition of their specialist expertise, there are relatively few specialty training requirements for rheumatology nurses. However, most rheumatology nurses are involved in assessing patients and monitoring the effects of treatment and providing advice and support for patients; a small minority of nurses have extended roles and can prescribe some treatments. A second challenge is interpreting the strength of evidence that specialist nurses provide effective care.
Against this background, the authors have undertaken a structured literature review (Gaertner et al., 2015) to assess the evidence from qualitative studies, clinical trials and observational studies on the impacts of rheumatology nurses on clinical outcomes and the experiences of patients with RA and also to examine, as far as possible, the skills and training of the specialist nurses involved in these research studies.

| METHOD
Medline was systematically searched using the key word search terms 'arthritis, rheumatoid' (MeSH) and 'nursing,' published between January 2000 and August 2018, including hand-searched relevant systematic reviews on the topic, for papers published in English.

| Inclusion/exclusion criteria
The inclusion criteria comprised: (i) patients with a diagnosis of RA, (ii) studies investigating the role of (specialist) nurses in their management, (iii) studies with any research design and (iv) the papers were in English.

| Screening
One reviewer (DS) screened titles/abstracts identified in the search.
A second reviewer (RB) independently screened the full text of 10% of all publications, identified against the agreed inclusion criteria.

| Data extraction
Two reviewers (DS and RB) extracted data including study design, year, setting, patients, the questions addressed and main conclusions of the study.

| Quality assessment
As these studies used multiple methods, their quality was assessed comparatively using CASP-UK Checklists for randomised controlled trials, qualitative studies, cohort and case-control studies (https:// casp-uk.net/casp-tools-checklists/ accessed 21.12.19).

| Qualitative studies
The seven qualitative studies (Arvidsson et al., 2006;Bala et al., 2012;Larsson et al., 2012;Long et al., 2002;Primdahl et al., 2011;Temmink et al., 2000;van Eijk-Hustings et al., 2013) showed that nurses made a positive impact in the way they were able to increase patients' knowledge of RA and promote their self-management abilities. These studies highlighted the holistic care provided by nurses, the benefits of education and emotional support and the ability of nurses to facilitate patient centred care and shared decision making compared with doctors.
Although all the studies provided support for the involvement of nurses in rheumatology care, they included limited information about the training and the clinical experiences of nurses. One exception was the report by Larsson et al. (2014), which evaluated five nurses with extensive rheumatology experience who had undergone special training in how to assess swollen and tender joints to make evidencebased assessments of disease activity.

| Clinical trials
The nine clinical trials published between 2012 and 2015 enrolled 2,440 patients. The trials varied in size and duration: the smallest trial involved 68 patients (Koksvik et al., 2013) and the largest 970 patients (Dougados et al., 2015); one trial lasted 6 months, five trials lasted 12 months and three trials were longer than 12 months with the longest lasting 35 months (Symmons et al., 2005). Seven trials had two patient groups, and two trials had three patient groups (Primdahl et al., 2014;Tijhuis et al., 2002). Eight of the trials had superiority designs, and one was a noninferiority trial (Ndosi et al., 2014). A synopsis of these nine trials, including their primary question, the intervention and control groups, their duration, their primary outcomes and their end-point comparisons, is shown in Table 2.
Six trials (Hill et al., 2003;Koksvik et al., 2013;Larsson et al., 2014;Ndosi et al., 2014;Primdahl et al., 2014;Ryan et al., 2006) compared care provided by specialist nurses with care provided conventionally by doctors or routine clinic nurses. The specialist nurses involved in these trials had a range of titles, including rheumatology nurse practitioners, clinical nurse specialists and nurse practitioners. In four trials, the primary outcome was the Disease Activity Score for 28 joints (DAS28) or DAS28 with C-reactive protein (DAS28-CRP) (van Riel & Renskers, 2016). In these trials, specialist nurses achieved similar outcomes to doctors. The other two trials also assessed changes in DAS28 as a secondary outcome and also found no significant difference between groups in changes in DAS28. In one trial, the coprimary outcome was changes in scores in the Rheumatology Attitude Index (Ryan et al., 2006), which suggested some benefits from specialist nurse care, though the differences did not reach statistical significance. In one trial, the primary outcome was changes in the  Dougados et al. (2015) evaluated the impact of trained nurses on RA comorbidity management; this trial showed they were able to identify more comorbidities.
The trials also provided variable information about the skills,

| Observational studies
Two observational cohort studies of clinics involved nurses within specialist clinics and one without nurse involvement were identified. Another case-control observational study by Watts et al. (2015) compared community-based nurse-led care with rheumatologist-led outpatient care and found only minimal differences in clinical outcomes between community and hospital follow-up. There was no detailed description of the nurses providing community-based care. that approaches retirement. This report also highlighted the variation in training and specifically focused on the need of timely recruitment and retention within the UK Rheumatology Nursing personnel.

| CONCLUSION
There is convincing evidence from qualitative studies, clinical trials and observational studies that specialist nurses deliver effective care for people with RA managed in a variety of settings. But important issues remain. Firstly, rheumatology nurses have no clearly defined professional identity as specialists in their field. Instead, they have a multiplicity of different titles. Secondly, there is no standardised training scheme for rheumatology nurses, and in all reviewed studies, the nurses had highly variable training and experience. There is a convincing case to adopt a more uniform approach to the role definition for rheumatology nurses and a need for more readily available training opportunities for them.