Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives.

OBJECTIVES: To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). METHODS: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories. RESULTS: The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE. CONCLUSION: The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.

2018 update of the EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis.

To update the European League Against Rheumatism (EULAR) recommendations for the role of the nurse in the management of chronic inflammatory arthritis (CIA) using the most up to date evidence. The EULAR standardised operating procedures were followed. A task force of rheumatologists, health professionals and patients, representing 17 European countries updated the recommendations, based on a systematic literature review and expert consensus. Higher level of evidence and new insights into nursing care for patients with CIA were added to the recommendation. Level of agreement was obtained by email voting. The search identified 2609 records, of which 51 (41 papers, 10 abstracts), mostly on rheumatoid arthritis, were included. Based on consensus, the task force formulated three overarching principles and eight recommendations. One recommendation remained unchanged, six were reworded, two were merged and one was reformulated as an overarching principle. Two additional overarching principles were formulated. The overarching principles emphasise the nurse's role as part of a healthcare team, describe the importance of providing evidence-based care and endorse shared decision-making in the nursing consultation with the patient. The recommendations cover the contribution of rheumatology nursing in needs-based patient education, satisfaction with care, timely access to care, disease management, efficiency of care, psychosocial support and the promotion of self-management. The level of agreement among task force members was high (mean 9.7, range 9.6-10.0). The updated recommendations encompass three overarching principles and eight evidence-based and expert opinion-based recommendations for the role of the nurse in the management of CIA.

The incidence of spondyloarthritis in Slovenia.

Epidemiological studies of spondyloarthritides (SpA) are rare and data for our country are lacking. We aimed to determine the incidence of SpA in a well-defined region in Slovenia.We performed a retrospective chart review of adults diagnosed with SpA between January 2014 and December 2016 at an integrated secondary/tertiary medical center, which provides rheumatology services to almost a half of the adult national population, that is, 700,000 adults. Potential cases were ascertained by searching the electronic medical records for ICD-10 codes M02, M07, M13, M45, M 46.1, K50, K51, and L40. SpA cases were stratified as axial and peripheral SpA and then the annual incidence rates of SpA overall and both subsets were estimated.During the 3-year period we identified 302 SpA cases (55.0% males, median [interquartile range] age 46.7 [35.0-57.5] years). 98 (32.5%) of them had predominantly axial SpA and the remainder peripheral SpA. The estimated annual incidence rate per 100,000 adults in our region was 14.3 (95% confidence interval [CI] 12.8-16.0) for SpA overall, 4.6 (95% CI 3.8-5.6) for axial SpA, and 9.6 (95% CI 8.4-11.1) for peripheral SpA.The estimated annual incidence rate of 14.3 cases per 100,000 adults in SpA overall was comparable to that of rheumatoid arthritis in our population. The peripheral SpA was twice as common as axial SpA.

The incidence rate and the early management of rheumatoid arthritis in Slovenia.

Epidemiological data for rheumatoid arthritis (RA) differ according to ethnicity and geographical region. Moreover, despite of clear RA management guidelines, the implementation of treat-to-target (T2T) strategy often remains incomplete. Our objectives were to determine the incidence rate of RA, the clinical characteristics, and the level of adherence to the T2T guidelines in Slovenia. We analyzed prospectively the collected data of adult patients diagnosed with RA from 2014 through 2016 at the Department of Rheumatology, University Medical Centre Ljubljana, Ljubljana, Slovenia. The department provides rheumatology services to a well-defined region with a population of 704,000 adult residents. During the 3-year observation, we identified 341 incipient cases of RA (75% females, median (IQR) aged 64 (52.0-75.4) years), resulting in an annual incidence rate of 16.1 per 100,000 adults (95% CI 14.5-17.9). The incidence rate peaked in the 70-79-year age interval. The median time from the onset of symptoms suggestive of RA to rheumatology consultation was 12.9 (4.4-26.1) weeks, and the median time from referral to consultation was 1 (1-3) day. Within 12 weeks of symptom onset, 161 (47.2%) incipient RA patients were examined by a rheumatologist, and 123 (36.1%) were started on DMARD therapy. The estimated incidence rate was in line with the available epidemiological data. Our early interventional clinic enabled us to identify and manage a substantial portion of RA patients within the recommended time frame.