Study selection and characteristics
A total of 2515 articles were screened, and finally 48 articles and 10 abstracts assessed as eligible and included in this review (Fig. 1): 1 meta-analysis, 17 randomised controlled trials (RCTs, summarised in Table 1), 6 quasi-experimental studies, 5 observational studies, 3 cross-sectional studies and 16 qualitative studies. Thirty-one articles exclusively dealt with the management of RA and 12 dealt with CIAs including RA. Three studies focused on rheumatic diseases in general and two on inflammatory rheumatic diseases. None of the identified articles solely considered PsA or AS. Specialised nursing personnel participated in 36 identified studies. Categories of additional evidence are presented in Table 2. Articles with studies of low evidence and abstracts were cited in this review only when higher evidence was not available. After consideration of a possible risk of bias in trials on pharmaceuticals and medical devices, which were supported by the producing companies, none of the studies was included in this SLR (supplementary table 1). No personal risk of bias was identified across the studies.
Table 1 Main characteristics of included meta-analysis and randomised controlled trials with high level of evidence (meta-analysis: no. 1, short-term studies: no. 2–6, long-term studies: no. 7–17)
Table 2 Additional evidence of 2010–2018 literature for recommendations of rheumatology nursing management in CIA according to Oxford – levels of evidence 2009
Synthesis of results
Recommendation 1 “Patients should have access to a nurse for education to improve knowledge of CIA and its management throughout the course of their disease”
Four RCTs reported benefits for patients: several trials aimed at improving not only patients’ knowledge [7] but also patients’ self-care ability [8] and self-efficacy [9, 10], global well-being [7, 9], empowerment [8], beliefs and behaviours to manage chronic illness [9]. In addition, education resulted in trained patients showing increased physical activity [10], able to reliably determine their disease activity [11] and being more probable to quit smoking [12]. In Europe, such education provided by non-physician health professionals is well established in 24 of 27 countries [13].
Recommendation 2 “Patients should have access to nurse consultations in order to experience improved communication, continuity and satisfaction with care”
A recent meta-analysis did not find a difference between nurse-led and physician-led follow-up after 1 and 2 years, even with low-evidence favour of nurse-led follow-up in patients with low disease-activity [14]. Direct comparisons in RCTs resulted in divergent priorities for nurses or physicians’ consultations [15,16,17]. After 1 year, satisfaction was equally estimated by CIA-patients with low disease activity under treatment with biologic agents, if physician-led care was replaced by a rheumatology nurse every second visit and nurses’ service of 30 min was preferred to physicians’ service of 15 min after 26 weeks but not after 52 weeks [17]. Qualitative studies confirmed the recommendation concerning improved communication [18,19,20] and continuity [19, 21] as experienced by the patients.
Recommendation 3 “Patients should have access to nurse-led telephone services to enhance continuity of care and to provide ongoing support”
According to a recent RCT, an outcome-based tele-health follow-up for tight control of RA patients with low disease activity or remission can achieve similar disease control as conventional outpatient follow-up by rheumatologists [22]. Already earlier, one RCT and one quasi-experimental study showed that telephone services increase patients’; empowerment [23] and satisfaction,[23, 24] enhance their motivation [19] and ensure safety under treatment. Besides, nurse-led telephone services have been established to provide additional care and as such are incorporated in different interventional services at least in 15 of 27 European countries [13]. Telephone services may also make access to care easier, but may also be initiated by the nurse.
Recommendation 4 “Nurses should participate in comprehensive disease management to control disease activity, to reduce symptoms and to improve patient-preferred outcomes”
Many studies including an RCT further investigated clinical outcomes using disease activity scores [7, 9, 15,16,17, 25,26,27,28,29]. Overall outcome of nurse-led care was not inferior to rheumatologists’ care as measured by disease activity in patients with low disease activity or remission, and maybe replaced even by outcome-based tele-health follow-up by nurses [22].
Recommendation 5 “Nurses should identify, assess and address psychosocial issues to minimise the chance of patients’ anxiety and depression”
In two RCTs, nurses’ interventions did not minimise patients’ anxiety and depression [7, 9]. Nurse-led education may improve global well-being but not necessarily patients’ psychosocial health [7, 9]. According to a survey, 74% of CIA patients preferred psychological support provided by a nurse compared to 55% by a physician [30].
Recommendation 6 “Nurses should promote self-management skills in order that patients might achieve a greater sense of control, self-efficacy and empowerment”
New RCTs studied different self-management skills (e.g. promoting education and physical exercise) and further confirmed that nurse-led interventions lead to higher self-efficacy [9, 10, 29] and more empowerment [23], especially among RA-patients, as confirmed for self-efficacy by a recent meta-analysis [14]. Sense of control was not studied.
Recommendation 7 “Nurses should provide care that is based on protocols and guidelines according to national and local contexts”
Guidelines and protocols most often referred to medical treatment and guide in monitoring visits during treatment with biological agents. Nurse practitioners benefited very strongly from an educational programme to further improve the management of RA [31, 32].
Recommendation 8 “Nurses should have access to and undertake continuous education to improve and maintain knowledge and skills”
Indeed, after various training programmes, nurses took over new roles [33,34,35,36,37] or improved their performance in the management of patients [31, 32, 38]. They performed joint examinations [33, 34] and examined gait, arms, legs and spine to distinguish between RA or non-RA [35]. Overall their work profile changed, as they gained more independence, took a more specific medical history, supported studies, provided information on infusions and administered those [36].
Recommendation 9 “Nurses should be encouraged to undertake extended roles after specialised training and according to national regulations”
Many RCTs with participation of specialised personnel were identified. Extended roles of nurse care include consultant role, advanced clinical tasks, administration of intra-articular injections and managing patient advice lines [13]. Legal constraints may limit the wide-spread performance of these roles. For the professionals themselves, specialised training led to higher work satisfaction, more independent work and implementation of new tasks [36], and increased self-confidence, knowledge and career opportunities for the nurses [13].
Recommendation 10 “Nurses should carry out interventions and monitoring as part of comprehensive disease management in order to achieve cost savings”
Cost reductions were reported together with stable outcome parameters in monitoring CIA-outpatients with stable and low disease activity under treatment with biological agents, with a nurse taking over every second visit of the rheumatologist [39]. Authors from different European countries performed economic analyses of various forms of nurse-led care, and the majority of economic analyses investigated an established nurse-led model of care [17, 26, 39, 40] provided by specialised nurses [17, 39,40,41]. Although nurse consultation costs were lower than physicians’ costs, there was only few evidence that nurse-led care decreases total costs compared to physician-led care [39]. When including loss of productivity into total costs, costs of nurse-led community care may be even higher than hospital care [40]. Cost-effectiveness studies have not been considered for this SLR, if disease activity outcome parameters were not comparable [42].