ObjectivesFatigue is prevalent in people with inflammatory rheumatic and musculoskeletal diseases (I-RMDs) and recognised as one of the most challenging symptoms to manage. The existence of multiple factors associated with driving and maintaining fatigue, and the evidence about what improves fatigue has led to a multifaceted approach to its management. However, there are no recommendations for fatigue management in people with I-RMDs. This lack of guidance is challenging for those living with fatigue and health professionals delivering clinical care. Therefore, our aim was to develop EULAR recommendations for the management of fatigue in people with I-RMDs.MethodsA multidisciplinary taskforce comprising 26 members from 14 European countries was convened, and two systematic reviews were conducted. The taskforce developed the recommendations based on the systematic review of evidence supplemented with taskforce members’ experience of fatigue in I-RMDs.ResultsFour overarching principles (OAPs) and four recommendations were developed. OAPs include health professionals’ awareness that fatigue encompasses multiple biological, psychological and social factors which should inform clinical care. Fatigue should be monitored and assessed, and people with I-RMDs should be offered management options. Recommendations include offering tailored physical activity and/or tailored psychoeducational interventions and/or, if clinically indicated, immunomodulatory treatment initiation or change. Patient-centred fatigue management should consider the individual’s needs and preferences, their clinical disease activity, comorbidities and other psychosocial and contextual factors through shared decision-making.ConclusionsThese 2023 EULAR recommendations provide consensus and up-to-date guidance on fatigue management in people with I-RMDs.

Approximately one third of individuals worldwide have not received a COVID-19 vaccine. Although studies have investigated risk factors linked to severe COVID-19 among unvaccinated people with rheumatic diseases (RDs), we know less about whether these factors changed as the pandemic progressed. We aimed to identify risk factors associated with severe COVID-19 in unvaccinated individuals in different pandemic epochs corresponding to major variants of concern. Patients with RDs and COVID-19 were entered into the COVID-19 Global Rheumatology Alliance Registry between March 2020 and June 2022. An ordinal logistic regression model (not hospitalized, hospitalized, and death) was used with date of COVID-19 diagnosis, age, sex, race and/or ethnicity, comorbidities, RD activity, medications, and the human development index (HDI) as covariates. The main analysis included all unvaccinated patients across COVID-19 pandemic epochs; subanalyses stratified patients according to RD types. Among 19,256 unvaccinated people with RDs and COVID-19, those who were older, male, had more comorbidities, used glucocorticoids, had higher disease activity, or lived in lower HDI regions had worse outcomes across epochs. For those with rheumatoid arthritis, sulfasalazine and B-cell-depleting therapy were associated with worse outcomes, and tumor necrosis factor inhibitors were associated with improved outcomes. In those with connective tissue disease or vasculitis, B-cell-depleting therapy was associated with worse outcomes. Risk factors for severe COVID-19 outcomes were similar throughout pandemic epochs in unvaccinated people with RDs. Ongoing efforts, including vaccination, are needed to reduce COVID-19 severity in this population, particularly in those with medical and social vulnerabilities identified in this study.

ObjectivesThe objective of this study is to evaluate whether there are differences in the long-term prognosis across various phenotypes of early arthritis (EA).MethodsThree EA cohorts (Reade, Etude et Suivi des Polyarthrites Indifférenciées Récentes (ESPOIR) and Early Arthritis Clinic (EAC)) were analysed. Clinical data were collected up to 24 years. Hands and feet radiographs were scored according to the Sharp van der Heijde (SvdH) method. Latent class analysis was applied to determine the EA phenotypes at baseline. Each class received a label reflecting its most prominent features. Prognostic outcomes included Health Assessment Questionnaire (HAQ), Short Form 36 (SF36) and SvdH score. The association between class membership and outcomes over time was tested in multivariable models.ResultsIn total, 390 (Reade), 798 (ESPOIR) and 3991 (EAC) patients were analysed separately. Two classes with symmetrical polyarthritis emerged; one of these labelled as autoimmune inflammatory polyarthritis (AIPA), had high likelihood of acute phase reactants (APR) elevation and autoantibody positivity, while the other (mild-inflammatory polyarthritis; MIPA) had not. A third class had oligoarthritis of upper limbs (OAUL) and could be subdivided into autoimmune OAUL and mild-inflammatory OAUL. A fifth class had oligoarthritis of lower limbs. The SvdH scores were worse in patients with APR/autoantibodies (AIPA) than in those without (MIPA). No clinically meaningful differences across classes in HAQ or SF36 over time were found.ConclusionRadiographic progression over time primarily occurs in EA patients with APR/autoantibodies. The absence of these markers, however, does not necessarily translate into better long-term function and quality of life. Clinicians should not only aim at preventing joint damage, but look beyond structural progression in order to further improve the lives of people with EA.

BackgroundPatient organisations are a key resource of information and support for people with rheumatic and musculoskeletal diseases (RMDs). Patient representatives advocate for the development of appropriate resources and provide organisations with a rich range of perspectives, including health literacy strengths, needs and preferences. Health literacy is defined as“the personal knowledge and competencies that accumulate through daily activities, social interactions and across generations. Personal knowledge and competencies are mediated by the organisational structures and availability of resources that enable people to access, understand, appraise and use information and services in ways that promote and maintain good health and well-being for themselves and those around them”[1].ObjectivesTo identify health literacy strengths and weaknesses among patient representatives of RMD patient organisations, and compare with an existing dataset of people with RMDs attending outpatient rheumatology clinics [2].MethodsAll patient representatives attending the EULAR PARE Conference 2022 were invited to participate in an online survey before the conference. Health literacy was assessed using the Health Literacy Questionnaire (HLQ), which provides scores for nine distinct domains (higher scores being better; scores range 1-4 for domains 1-5, and 1-5 for domains 6-9). The survey also included socio-demographics and health-related characteristics. Hierarchical cluster analysis of patient representatives’ HLQ domain scores identified distinct health literacy profiles, based on minimal variance within and maximum variance between profiles. Results were compared with an existing cross-sectional sample of 895 patients with RMDs from different regions in the Netherlands. HLQ domain scores and patient characteristics were compared using chi-square and independent t-tests. Identified health literacy profiles were compared visually using heat maps.Results56 patient representatives completed the survey (76% response rate). Compared to previously surveyed patients, patient representatives were younger (mean ±SD age 49.3±13.0 vs. 61.1±13.9), more often female (79% vs. 49%, p<0.001), more highly educated (79% vs. 24.5% high education, 0% vs. 51% low education, p<0.001), more often employed (64% vs. 33%, p<0.001), and less often of migrant background (7% vs. 18%, p=0.044). Both groups were similar in terms of comorbidities (RDCI = 1.3 vs. 1.2), self-reported health (6.5 vs. 6.4), household (16% vs. 25% living alone) and mastery (20.3 vs. 20.0). Patient representatives scored higher on “3. Actively managing health” (3.1 vs. 2.9, p=0.001 & “5. Critical appraisal of information (3.2 vs. 2.7, p<0.001), but lower on “6. Actively engaging with providers” (3.6 vs. 4.0, p=0.001) & “7. Navigating the health system” (3.5 vs. 3.8, p=0.002). While similar patterns were seen in health literacy profiles, the profiles that represent most complex challenges in the patient survey (representing 16% of patients) were not found among patient representatives (see Figure 1).ConclusionPatient representatives of RMD patient organisations represent diverse profiles of health literacy strengths and weaknesses, but the most complex challenges in the original patient survey were not found. Differences may relate to how patients are selected and supported to become a representative, and how being a representative improves some aspects of health literacy. Patient organisations should take into account that their target population generally has more difficulty actively managing health and critically appraising information, and includes more people with diverse health literacy needs than their patient representatives may report.

BackgroundRheumatic and musculoskeletal diseases (RMDs) are a burden for individuals and a challenge to healthcare systems.Comparing the current and the future number of rheumatologists and the frequency of RMDs, studies state a huge gap. Another key issue is the uneven distribution of rheumatologists in most countries. These deficits are glaring in low and middle income countries in particular. In sub-Saharan Africa e.g. just in the past 20 years more attention has been drawn to non-communicable diseases. Great challenges exist in Latin America.Patient organisations (POs) offer information and assistance, are competence networks, represent and advocate for patients’ interests and needs and play a pivotal role in healthcare systems.ObjectivesOverarching:With its activities IPARE aims at contributing to a world, where RMDs are recognized, prevented and cured, and patient-centredness is an integral part of health care delivery.Thespecificaims are.To connect and exchange with national patient organisations and continental networks/organisations of patient organisations from other continents than Europe.To develop, step by step, a network of globally active national POs, national umbrella POs and continental POs.To initiate collaborative projects in the field of education, research, quality of care, congress and advocacy.To share best practices aiming at developing and supporting POs and pan-continental POs.To promote the access to and the exchange at conferences and congresses for RMDs.MethodsIPARE is a PARE project group embedded in the PARE Sub-Committee „Community Relations“, meaning all EULAR regulations will apply.A small project group consisting of representatives from South and Central America, North America, Africa and Europe has been established. We are aiming at enlarging the group (e.g. by having a representative from Asia), but the total number should not exceed 10 in order to work efficiently.After an introductory in-person meeting at the PARE Conference in October the members decided to meet virtually every 6-8 weeks. Webinars are offered every 2-3 months.Aspects of membership, objectives, mode of working were defined.ResultsThe project group members identified - in spite of different health care systems, economic statuses and the extent of the deficits - certain commonalities like lack of rheumatologists (in particular lack of paediatric rheumatologists), shortage of health professionals (e.g. nurses, physiotherapists trained for the treatment of RMDs), delayed diagnosis, access to medical treatment according to internationally accepted treatment recommendations, insufficient non-pharmacological treatment, needs to educate the public and create awareness for RMDs and the situation of people with an RMD, research and patient involvement in research.The group developed a first list of items how these deficits could be tackled, how we can collaborate being aware of the fact that national peculiarities and features and language items have to be taken into account if any material will be produced. To avoid duplication and to check what already exists, an inventory list of informative and educational material is being established.A first webinar open to all representatives of international patient organisations is determined for February.ConclusionThe project group members work with great enthusiasm, are eager to share knowledge and want to learn what can be implemented in their organisations and countries. In addition the group members focus on supranational issues.The project group members share, learn and convey to support implementation.Reference[1]Objectives have to be approved by the PARE Council.Acknowledgements:NIL.Disclosure of InterestsNone Declared.

BackgroundPatients (pts) with early arthritis (EA) may present with more or less classical inflammatory disease phenotypes. It is difficult to discern at presentation those who will evolve to a well-defined phenotype (e.g., rheumatoid arthritis; RA) from those who will remain undifferentiated or even will have non-inflammatory disease. The 2010 RA classification criteria were developed to promote early identification of RA and were validated against the external standard of ‘expert diagnosis’, a well-known approach that -however- may lead to circularity.ObjectivesObtain a more unbiased insight into the ‘Gestalt’ of EA, by circumventing expert opinion, and investigating the latent phenotypes underlying EA and whether there are differences in prognosis across these phenotypes over time.MethodsThree cohorts of pts with EA (Reade, ESPOIR and EAC) were analyzed separately. Clinical data were collected up to 12 (ESPOIR), 13 (Reade) or 24 (EAC) years. Hands and feet radiographs were scored, according to the Sharp van der Heijde method (SvdH) up to 10 (ESPOIR), 13 (Reade) and 14 (EAC) years. Latent class analysis was used to estimate the latent (i.e., unobserved) classes of EA. Each class was labelled by us, according to its most prominent features. Outcomes were functional disability, quantified by the health assessment questionnaire (HAQ), quality of life (QoL) quantified by the short form 36 physical (SF36 PC) and mental (SF36 MC) components (in ESPOIR) and radiographic damage (SvdH score). The association between class-membership and each outcome over time was tested in multivariable GEE models.ResultsIn total, 390 (Reade), 798 (ESPOIR) and 1878 (EAC) pts were included. In ESPOIR, 4 latent classes could be distinguished (Figure 1); Two classes had a high likelihood of symmetrical polyarthritis. One of these, labelled as autoimmune inflammatory polyarthritis (AIPA), had a high likelihood of acute phase reactants (APR)-elevation and autoantibody (AB)-positivity, while the other (mild inflammatory polyarthritis; MIPA) had not. The third class had fewer joints involved (oligoarthritis of upper limbs; OAUL) and the fourth included pts with oligoarthritis of the lower limbs (OALL). All classes, except the latter, were also identified in Reade. In the EAC, OAUL could further be divided into autoimmune OAUL (AIOAUL) and mild-inflammatory OAUL (MIOAUL). In all cohorts, SvdH-scores were consistently worse in classes with AB and APR present (AIPA) than in those without. An example from the EAC cohort shows pts in the MIPA-class had on average 18.5 SvdH-units less than patients in the AIPA-class (Table 1). However, the mean HAQ- and SF36-scores were remarkably similar over time across all classes. The few statistically significant effect-sizes were small and of no clinical relevance.ConclusionEA pts presenting with elevated (APR and autoantibodies) markers, the phenotype most consistent with the ‘classic RA-construct’, develop more radiographic damage than those without these markers. However, pts with more damage do not necessarily have worse physical function or QoL (measured up to 24 years). These results may justify immediate DMARD-treatment for preventing damage for the proportion of EA-patients that present with an AIPA-phenotype, but not necessarily for all others.Table 1.Prognosis of EA phenotypesHAQ (0-3)β (95% CI)SF36 PC (0-100)β (95% CI)SF36 MC (0-100)β (95% CI)SvdH (0-448)β (95% CI)ReadeMIPA vs AIPA0.2 (0.1; 0.3)**-7.0 (-9.4; -4.5)OAUL vs AIPA0.0 (-0.2; 0.1)**-2.7 (-5.9; 0.5)ESPOIRMIPA vs AIPA0.0 (-0.1; 0.1)-0.2 (-1.5; 1.1)-0.2 (-1.8; 1.3)-4.3 (-6.5; -2.2)OAUL vs AIPA-0.1 (-0.1; 0.0)0.5 (-0.5; 1.4)-0.7 (-2.0; 0.5)-0.8 (-3.1; 1.5)OALL vs AIPA0.0 (-0.2; 0.1)-1.0 (-3.4; 1.4)-1.7 (-5.1; 1.7)-4.5 (-6.8; -2.2)EACMIPA vs AIPA-0.1 (-0.2; 0.0)**-18.5 (-25.2; -11.9)AIOAUL vs AIPA-0.1 (-0.2; 0.0)**-6.3 (-15.1; 2.6)MIOAUL vs AIPA0.0 (-0.1; 0.1)**0.7 (-5.3; 6.7)OALL vs AIPA-0.1 (-0.2; 0.1)**-6.8 (-19.2; 5.5)ESPOIR: models adjusted for age, gender, DAS28, NSAIDs, GCs, csDMARDs, bDMARDs. Reade and EAC: age, gender and DAS28. * Not available.AcknowledgementsAS and BvD contributed equally to this work.Disclosure of InterestsNone Declared.

BackgroundThe EULAR task force “Implementation of a mobile health app for the self-management of juvenile-onset rheumatic and musculoskeletal diseases (jRMDs) during transitional care” aims at designing, developing and implementing a self-management program through a smartphone app (i.e., the EULAR Move-Up app). The first step of this task force was to adapt the current EULAR recommendations/points originally developed for adults, to young people (YP) with jRMDs.ObjectivesAdapting EULAR recommendations/points for patient education, pain management and physical activity for self-management of jRMDs during transitional care.MethodsA multidisciplinary taskforce of 25 members from 11 European countries was convened. Using a Delphi technique, the level of agreement was established by anonymous online voting in three rounds.ResultsFour overarching principles and 8 points to consider were formulated (Table 1). The agreement was high, ranging from 8.7 to 9.9.ConclusionThis work will feed into an evidence-based framework to inform the development of the EULAR Move-Up app aiming at improving the quality of transitional care of jRMDs.Table 1.Overarching principles and points to consider for the self-management of juvenile-onset rheumatic and musculoskeletal diseases during transitional careOverarching principlesAgreement (0 to 10)1YP with jRMDs should be offered education, physical activity advice and pain management recommendations and provided with access to relevant resources during transitional care, as soon as possible following the diagnosis9.62Health professionals in rheumatology should consider the use of digital health interventions in transitional care to support self-management9.53The content and delivery of transitional care should be individually tailored and needs-based according to the patients’ priorities, preferences, capabilities and resources9.64Transitional care interventions should have clear personalised aims, which should be evaluated over time, preferably by a combination of objective and subjective (patient-reported outcome measures) assessments9.9Adapted points to consider in education1Education is a planned interactive learning process designed to support and enable YP with jRMDs to manage their health and chronic condition, and optimise their health and well-being during transitional care9.52Education should consist of a variety of learning formats and the programme should be designed through a shared decision-making process9.43Education should include the evaluation of outcomes reflecting both the knowledge acquired and, most importantly, translation to behaviour change8.7Adapted points to consider in pain management4All patients and their carers should be offered education on the importance of maintaining healthy body composition and explained that unhealthy body composition could contribute to pain and disability9.85Non-pharmacological approaches (e.g., physical activity, lifestyle change, psychological interventions) should be prioritised in newly-diagnosed patients and those in transitional care. If indicated, the patient should receive pharmacological treatment according to the most recent recommendations9.6Adapted points to consider on physical activity6Physical activity is part of a healthy lifestyle and should be optimised during the lifespan of individuals of all ages9.87Physical activity has health benefits for YP with jRMDs during transitional care and helps establishing healthy behaviours and lifestyles during adulthood9.88Healthcare providers should consider different formats of delivery of physical activity, in line with YP’s preferences and disease requirements9.6YP = Young people; jRMDs = juvenile-onset rheumatic and musculoskeletal diseases;REFERENCES:NIL.Acknowledgements:NIL.Disclosure of InterestsRafael Prieto-Moreno: None declared, Javier Courel-Ibañez: None declared, Erica Briones-Vozmediano: None declared, Saskya Angevare: None declared, Jordi Anton: None declared, Patrocinio Ariza-Vega: None declared, Ilaria Bini: None declared, Daniel Clemente: None declared, Matilde Correia: None declared, Wendy Costello: None declared, De Cock Diederik: None declared, Andrea Domjan: None declared, Leticia Leon Mateos: None declared, Andrea Marques: None declared, Kirsten Minden Grant/research support from: Honoraria from Pfizer, Novartis and Medac., Ana Filipa Mourão: None declared, Aurelie Najm: None declared, Seza Özen: None declared, Georgina Pimentel: None declared, Zainab Saleem: None declared, Tomas Vetrovsky: None declared, Nico Wulffraat: None declared, Andrea Zacarias: None declared, Yeliz Prior: None declared, Loreto Carmona: None declared, Fernando Estevez-Lopez: None declared.

BackgroundPostgraduate rheumatology training programmes are already established at a national level in most European countries. However, previous work has highlighted a substantial level of heterogeneity in the organisation and, in part, content of programmes.ObjectiveTo define competences and standards of knowledge, skills and professional behaviours required for the training of rheumatologists.MethodsA European Alliance of Associations for Rheumatology (EULAR) task force (TF) of 23 experts, including two members of the European Union of Medical Specialists (UEMS) section of rheumatology, was convened. The mapping phase consisted of the retrieval of key documents on specialty training in rheumatology and other related specialties across a broad set of international sources. The content of these documents was extracted and represented the foundation for the document draft that underwent several rounds of online discussion within the TF, and afterwards was also distributed to a broad group of stakeholders for collecting feedback. The list of generated competences was voted on during the TF meetings, while the level of agreement (LoA) with each statement was established by anonymous online voting.ResultsA total of 132 international training curricula were retrieved and extracted. In addition to the TF members, 253 stakeholders commented and voted on the competences through an online anonymous survey. The TF developed (1) an overarching framework indicating the areas that should be addressed during training, (2) 7 domains defining broad areas that rheumatology trainees should master by the end of the training programme, (3) 8 core themes defining the nuances of each domain and (4) 28 competences that trainees should acquire to cover each of the areas outlined in the overarching framework. A high LoA was achieved for all competences.ConclusionThese points to consider for EULAR–UEMS standards for the training of European rheumatologists are now defined. Their dissemination and use can hopefully contribute to harmonising training across European countries.

Background: Patient engagement with clinicians results in shared decision making and increased adherence to medication. However, in order for strong patient: clinician partnerships to be achieved, communication barriers need to be identified. Therefore, the aim of this study was to examine the level of understanding of inflammatory arthritis patients and the need for strong patient-partnership in research. Methods: An online anonymous survey was distributed to patients living with inflammatory arthritis which addressed questions about diagnosis, routine tests, medications and how they work, medication adherence, disease flare, heredity, pregnancy, and patient involvement in research. Results: There were 1,873 respondents, 1416 of which had inflammatory arthritis (IA)- rheumatoid arthritis (RA) (65.8%) and psoriatic arthritis (PsA) (34.2%). They were predominantly female (RA 86%, PsA 85 %), aged 55±13 and 50±12 years. Less than 35% of patients had an understanding of diagnostic tests, what was measured and the implication for disease, with 75.5% also concerned about heredity. There was a high level of understanding of how specific medications treat inflammatory arthritis (72.9%). Adherence was also very high (>87%), with the main reasons for stopping medication without the advice of their clinician, 'feeling better' and 'side effects' however a significant proportion of patients (69.9%) reported a disease-flare following cessation of medication. Patients (31%) were also concerned that inflammatory arthritis reduced their chances of getting pregnant, with only 8% believing arthritis medications were safe to take during pregnancy. Finally, only 9% of patients had ever been asked to participate in a research study. Conclusions: This study demonstrates a need for the development of stronger patient-partnerships with clinicians and researchers in relation to patient education and engagement with research, to create a platform where patients can have meaningful input and involvement in future research studies.