Evaluating the participation of junior members and patient and healthcare professionals representatives in EULAR task forces: results from an international survey.

OBJECTIVE: European Alliance of Associations for Rheumatology (EULAR) task forces (TF) requires participation of ≥2 junior members, a health professional in rheumatology (HPR) and two patient research partners for the development of recommendations or points to consider. In this study, participation of these junior and representative members was compared with the one of traditional TF members (convenor, methodologist, fellow and expert TF members). METHODS: An online survey was developed and emailed to previous EULAR TF members. The survey comprised multiple-choice, open-ended and 0-100 rating scale (fully disagree to fully agree) questions. RESULTS: In total, 77 responded, 48 (62%) women. In total, 46 (60%) had participated as a junior or representative TF member. Most junior/representative members reported they felt unprepared for their first TF (10/14, 71%). Compared with traditional members, junior/representative members expressed a significantly higher level of uncertainty about their roles within the TF (median score 23 (IQR 7.0-52.0) vs 7 (IQR 0.0-21.0)), and junior/representative members felt less engaged by the convenor (54% vs 71%). Primary factors that facilitated interaction within a TF were experience, expertise and preparation (54%), a supportive atmosphere (42%) and a clear role (12%). CONCLUSION: Juniors, patients and HPR experience various challenges when participating in a EULAR TF. These challenges differ from and are generally less pronounced than those experienced by traditional TF members. The convenor should introduce the participants to the tasks, emphasise the value of their contributions and how to prepare accordingly for the TF meeting.

Synthesis of guidance available for assessing methodological quality and grading of evidence from qualitative research to inform clinical recommendations: a systematic literature review.

OBJECTIVE: To understand (1) what guidance exists to assess the methodological quality of qualitative research; (2) what methods exist to grade levels of evidence from qualitative research to inform recommendations within European Alliance of Associations for Rheumatology (EULAR). METHODS: A systematic literature review was performed in multiple databases including PubMed/Medline, EMBASE, Web of Science, COCHRANE and PsycINFO, from inception to 23 October 2020. Eligible studies included primary articles and guideline documents available in English, describing the: (1) development; (2) application of validated tools (eg, checklists); (3) guidance on assessing methodological quality of qualitative research and (4) guidance on grading levels of qualitative evidence. A narrative synthesis was conducted to identify key similarities between included studies. RESULTS: Of 9073 records retrieved, 51 went through to full-manuscript review, with 15 selected for inclusion. Six articles described methodological tools to assess the quality of qualitative research. The tools evaluated research design, recruitment, ethical rigour, data collection and analysis. Seven articles described one approach, focusing on four key components to determine how much confidence to place in findings from systematic reviews of qualitative research. Two articles focused on grading levels of clinical recommendations based on qualitative evidence; one described a qualitative evidence hierarchy, and another a research pyramid. CONCLUSION: There is a lack of consensus on the use of tools, checklists and approaches suitable for appraising the methodological quality of qualitative research and the grading of qualitative evidence to inform clinical practice. This work is expected to facilitate the inclusion of qualitative evidence in the process of developing recommendations at EULAR level.

One-year effectiveness of long-term exercise therapy in people with axial spondyloarthritis and severe functional limitations.

OBJECTIVE: To evaluate the effectiveness of long-term, personalized, supervised exercise therapy on functional ability compared with usual care in people with axial spondyloarthritis (axSpA) and severe functional limitations. METHODS: Participants were randomly 1:1 assigned to the intervention(maximal 64 sessions, with 14 additional optional sessions of supervised active exercise therapy(e.g. aerobic and muscle strengthening) with individualized goal-setting, education and self-management regarding physical activity) or usual care(care determined by clinician(s) and participants themselves). Primary end point was the change in the Patient-Specific Complaints activity ranked 1 (PSC1 (0-10)) at 52 weeks. Secondary endpoints were the PSC activities ranked 2 and 3, the Bath Ankylosing Spondylitis Functional Index, 6-min walk test, Patient Reported Outcome Measurement Information System-Physical Function-10 and the Short Form-36 Physical and Mental Component Summary Score (SF-36 PCS and MCS). Statistical comparisons comprised independent student t-tests and linear mixed models, based on intention-to-treat. RESULTS: 214 participants(49% female, age 52 (SD 12) years), were randomized to the intervention (n = 110) or usual care (N = 104) group. In the intervention group 93% started treatment, using on average 40.5 sessions (SD 15.1). At 52 weeks, the difference in change in PSC1 between groups favored the intervention group (mean difference [95% CI]; -1.8 [-2.4 to -1.2]). additionally, all secondary outcomes, except the SF-36 MSC, showed significantly greater improvements in the intervention group with effect sizes ranging from 0.4-0.7. CONCLUSION: Long-term, supervised exercise therapy proved more effective than usual care in improving functional disability and physical quality of life in people with axSpA and severe functional limitations. CLINICAL TRIAL REGISTER NUMBER: Netherlands Trial Register NL8238, included in the International Clinical Trial Registry Platform (ICTRP) (https://trialsearch.who.int/Trial2.aspx?TrialID=NL8238).

EULAR recommendations for the non-pharmacological core management of hip and knee osteoarthritis: 2023 update.

INTRODUCTION: Hip and knee osteoarthritis (OA) are increasingly common with a significant impact on individuals and society. Non-pharmacological treatments are considered essential to reduce pain and improve function and quality of life. EULAR recommendations for the non-pharmacological core management of hip and knee OA were published in 2013. Given the large number of subsequent studies, an update is needed. METHODS: The Standardised Operating Procedures for EULAR recommendations were followed. A multidisciplinary Task Force with 25 members representing 14 European countries was established. The Task Force agreed on an updated search strategy of 11 research questions. The systematic literature review encompassed dates from 1 January 2012 to 27 May 2022. Retrieved evidence was discussed, updated recommendations were formulated, and research and educational agendas were developed. RESULTS: The revised recommendations include two overarching principles and eight evidence-based recommendations including (1) an individualised, multicomponent management plan; (2) information, education and self-management; (3) exercise with adequate tailoring of dosage and progression; (4) mode of exercise delivery; (5) maintenance of healthy weight and weight loss; (6) footwear, walking aids and assistive devices; (7) work-related advice and (8) behaviour change techniques to improve lifestyle. The mean level of agreement on the recommendations ranged between 9.2 and 9.8 (0-10 scale, 10=total agreement). The research agenda highlighted areas related to these interventions including adherence, uptake and impact on work. CONCLUSIONS: The 2023 updated recommendations were formulated based on research evidence and expert opinion to guide the optimal management of hip and knee OA.

Educational readiness among health professionals in rheumatology: low awareness of EULAR offerings and unfamiliarity with the course content as major barriers-results of a EULAR-funded European survey.

BACKGROUND: Ongoing education of health professionals in rheumatology (HPR) is critical for high-quality care. An essential factor is education readiness and a high quality of educational offerings. We explored which factors contributed to education readiness and investigated currently offered postgraduate education, including the European Alliance of Associations for Rheumatology (EULAR) offerings. METHODS AND PARTICIPANTS: We developed an online questionnaire, translated it into 24 languages and distributed it in 30 European countries. We used natural language processing and the Latent Dirichlet Allocation to analyse the qualitative experiences of the participants as well as descriptive statistics and multiple logistic regression to determine factors influencing postgraduate educational readiness. Reporting followed the Checklist for Reporting Results of Internet E-Surveys guideline. RESULTS: The questionnaire was accessed 3589 times, and 667 complete responses from 34 European countries were recorded. The highest educational needs were 'professional development', 'prevention and lifestyle intervention'. Older age, more working experience in rheumatology and higher education levels were positively associated with higher postgraduate educational readiness. While more than half of the HPR were familiar with EULAR as an association and the respondents reported an increased interest in the content of the educational offerings, the courses and the annual congress were poorly attended due to a lack of awareness, comparatively high costs and language barriers. CONCLUSIONS: To promote the uptake of EULAR educational offerings, attention is needed to increase awareness among national organisations, offer accessible participation costs, and address language barriers.

Consensus-based recommendations on communication and education regarding primary care physical therapy for patients with systemic sclerosis.

OBJECTIVE: This study aimed to develop recommendations for communication and postgraduate education regarding primary care physical therapy for systemic sclerosis (SSc) patients. METHODS: A virtual Nominal Group Technique was used with tasks forces for communication (n = 18) and education (n = 21). Both included rheumatologists, physical therapists (PTs) in primary, secondary or tertiary care, rheumatology nurses, advanced nurse practictioners and patient representatives. Three online meetings were organised for each task force to discuss (1) current bottlenecks; (2) potential solutions; and (3) the resulting draft recommendations. After the final adjustments, participants rated their level of agreement with each recommendation on a scale from 0 (not at all agree) to 100 (totally agree), using an online questionnaire. RESULTS: 19 and 34 recommendations were formulated for communication and education, respectively. For communication the main recommendations concerned the provision of an overview of primary care physical therapists with expertise in rheumatic and musculoskeletal diseases to patients and rheumatologists, the inclusion of the indication by the rheumatologist in the referral to the physical therapist and low-threshold communication with the rheumatologist in case of questions or concerns of the physical therapist. For postgraduate education three types of "on demand" educational offerings were recommended with varying levels of content and duration, to match the competencies and preferences of individual primary care physical therapists. CONCLUSION: Using a systematic qualitative approach, two multi-stakeholder task forces developed practical recommendations for primary care physical therapists' communication with hospital-based care providers and postgraduate education regarding the treatment of SSc patients.

EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2022 update.

OBJECTIVES: To provide an update of the EULAR rheumatoid arthritis (RA) management recommendations addressing the most recent developments in the field. METHODS: An international task force was formed and solicited three systematic literature research activities on safety and efficacy of disease-modifying antirheumatic drugs (DMARDs) and glucocorticoids (GCs). The new evidence was discussed in light of the last update from 2019. A predefined voting process was applied to each overarching principle and recommendation. Levels of evidence and strengths of recommendation were assigned to and participants finally voted on the level of agreement with each item. RESULTS: The task force agreed on 5 overarching principles and 11 recommendations concerning use of conventional synthetic (cs) DMARDs (methotrexate (MTX), leflunomide, sulfasalazine); GCs; biological (b) DMARDs (tumour necrosis factor inhibitors (adalimumab, certolizumab pegol, etanercept, golimumab, infliximab including biosimilars), abatacept, rituximab, tocilizumab, sarilumab and targeted synthetic (ts) DMARDs, namely the Janus kinase inhibitors tofacitinib, baricitinib, filgotinib, upadacitinib. Guidance on monotherapy, combination therapy, treatment strategies (treat-to-target) and tapering in sustained clinical remission is provided. Safety aspects, including risk of major cardiovascular events (MACEs) and malignancies, costs and sequencing of b/tsDMARDs were all considered. Initially, MTX plus GCs is recommended and on insufficient response to this therapy within 3-6 months, treatment should be based on stratification according to risk factors; With poor prognostic factors (presence of autoantibodies, high disease activity, early erosions or failure of two csDMARDs), any bDMARD should be added to the csDMARD; after careful consideration of risks of MACEs, malignancies and/or thromboembolic events tsDMARDs may also be considered in this phase. If the first bDMARD (or tsDMARD) fails, any other bDMARD (from another or the same class) or tsDMARD (considering risks) is recommended. With sustained remission, DMARDs may be tapered but should not be stopped. Levels of evidence and levels of agreement were high for most recommendations. CONCLUSIONS: These updated EULAR recommendations provide consensus on RA management including safety, effectiveness and cost.

Lessons learned from a pilot implementation of physical activity recommendations in axial spondyloarthritis exercise group therapy.

BACKGROUND: The Ankylosing Spondylitis Association of Switzerland (SVMB) aimed to implement physical activity recommendations (PAR) within their exercise groups (EGs). The PAR promote exercise in all fitness dimensions at the correct dose. To implement the PAR within EGs, they were translated into a new EG concept with five key activities: (a) training for supervising physiotherapists (PTs), (b) correctly dosed exercises in all fitness dimensions, (c) exercise counselling, (d) bi-annual fitness assessments, and (e) individual exercise training, in addition to EG. All these activities were realized in close coordination with SVMB management. OBJECTIVES: To analyse the implementation success by evaluating adherence/fidelity, feasibility, and satisfaction at the patient, PTs, and organisational level. METHODS: The five key activities of the new EG concept were developed, executed, and assessed after 6 months. The primary outcomes for implementation success were adherence of patients to the recommended exercise behaviour, self-reported by electronic diary; fidelity of PTs to the new concept, self-reported by diary; SVMB organisational changes. Secondary outcomes were feasibility and satisfaction with the new EG concept at all three levels. The tertiary outcome, to evaluate the effectiveness of PAR, was patient fitness, assessed through fitness assessments. RESULTS: 30 patients with axSpA (ten women, mean age 58 ± 9 years) and four PTs (three women, mean age 46 ± 9 years) participated. The patients' self-reporting of adherence to the PAR was insufficient (43%), possibly due to technical problems with the electronic dairy. The PTs' fidelity to the new EG concept was satisfactory. On all levels, the new concept was generally perceived as feasible and useful for supporting personalised exercise.The frequency of exercise counselling and the fitness assessments was found by patients and PTs to be too high and rigid. Patients' cardiorespiratory fitness [ES 1.21 (95%CI 0.59, 1.89)] and core strength [ES 0.61 (95%CI 0.18, 1.06)] improved over the 6 months. CONCLUSIONS: The pilot implementation of PAR showed acceptance and satisfaction to be sufficient, thus confirming the need for evidence-based EGs, provided by a patient organisation in order to support active PA behaviour. However, adaptations are necessary to increase its feasibility for nationwide implementation. TRIAL REGISTRATION: SNCTP, SNCTP000002880. Registered 31 May 2018, https://www.kofam.ch/en/snctp-portal/search/0/study/42491 .

Reliability of an adapted core strength endurance test battery in individuals with axial spondylarthritis.

OBJECTIVES: To adapt the core strength endurance test battery (aCSE), previously used for testing athletes, to a target group of patients with axial spondylarthritis (axSpA), to evaluate its intra-tester reliability and its associations with disease-specific factors. METHODS: A cross-sectional study was conducted at axSpA exercise therapy groups, including both axSpA patients and the physiotherapist group leaders (PTs). The aCSE was used to measure the isometric strength endurance of the ventral, lateral, and dorsal core muscle chains (measured in seconds), as well as to assess the disease-specific factors of functional status, self-reported pain, and perceived strength performance. The aCSE was repeated after 7-14 days to measure intra-tester reliability for the same rater (PT group leader). Reliability was calculated as an intra-class correlation coefficient (ICC) using a nested design. The associations between ventral, lateral, and dorsal strength endurance and the disease-specific factors were calculated using Pearson correlation coefficients. RESULTS: Study participants were 13 PT group leaders and 62 axSpA patients. The latter were all capable of performing the aCSE, with the exception of one individual. A moderate to substantial intra-rater reliability (ICCs (95%CI)) was found for the ventral (0.54 (0.35, 0.74)), lateral (0.52 (0.33, 0.70)), and dorsal (0.71 (0.58, 0.86)) core muscle chains. None of the aCSE measures correlated with the disease-specific factors. CONCLUSION: The aCSE was found to be a reliable test battery for assessing core strength endurance in axSpA patients. Interestingly, aCSE performance was not associated with any disease-specific factors. Key Points • The adapted core strength endurance test battery measures the isometric strength of the ventral, lateral and dorsal core muscle chains. • The adapted core strength endurance test battery showed a moderate to substantial intra-rater reliability for all three muscle chains tested in axSpA patients. • No correlations were found between the adapted core strength endurance test battery and the disease-specific factors of self-reported pain, functional status and perceived strength performance.

2019 EULAR recommendations for the generic core competences of health professionals in rheumatology.

BACKGROUND/OBJECTIVES: To maintain and optimise the quality of care provided by health professionals in rheumatology (HPRs), adequate educational offerings are needed. This task force (TF) aimed to develop evidence-based recommendations for the generic core competences of HPRs, with specific reference to nurses, physical therapists (PTs) and occupational therapists (OTs) to serve as a basis for their postgraduate education. METHODS: The EULAR standardised operating procedures for the development of recommendations were followed. A TF including rheumatologists, nurses, PTs, OTs, patient-representatives, an educationalist, methodologists and researchers from 12 countries met twice. In the first TF meeting, 13 research questions were defined to support a systematic literature review (SLR). In the second meeting, the SLR evidence was discussed and recommendations formulated. Subsequently, level of evidence and strength of recommendation were assigned and level of agreement (LoA) determined (0-10 rating scale). RESULTS: Three overarching principles were identified and 10 recommendations were developed for the generic core competences of HPRs. The SLR included 79 full-text papers, 20 of which addressed the competences, knowledge, skills, attitudes and/or educational needs of HPRs from multiple professions. The average LoA for each recommendation ranged from 9.42 to 9.79. Consensus was reached both on a research and educational agenda. CONCLUSION: Evidence and expert opinion informed a set of recommendations providing guidance on the generic core competences of HPRs. Implementation of these recommendations in the postgraduate education of HPRs at the international and national level is advised, considering variation in healthcare systems and professional roles.

The effect and safety of exercise therapy in patients with systemic sclerosis: a systematic review.

Given the shortcomings of previous literature reviews evaluating the effect and safety of exercise therapy in SSc, we aimed to carry out a systematic review of the literature specifically on this topic. A structured search strategy was performed in Medline (via PubMed) and other electronic databases from 1990 to 3 September 2019. Randomized controlled trials, observational designs, conference abstracts and trial registrations were included if they concerned SSc patients ≥18 years of age, exercise therapy and reported outcomes related to physical functioning. Nine articles were included. Four randomized controlled trials compared (a) hand exercises, (b) orofacial exercises, (c) aerobic exercises or (d) aerobic exercises plus resistance training with no exercise, demonstrating effects on hand function (a), maximum mouth opening (b), peak oxygen uptake (c + d) and quality of life. All five observational studies concerning hand, orofacial, aerobic and/or strengthening exercises reported improvements of hand function, mouth opening, aerobic capacity and/or muscle strength. In conclusion, the evidence on the effect and safety of exercise therapy in SSc is scanty.

Development of generic core competences of health professionals in rheumatology: a systematic literature review informing the 2018 EULAR recommendations.

Objective: To identify generic competences on the desired knowledge, skills and of health professionals in rheumatology (HPRs) to inform the respective EULAR recommendations. Methods: A systematic literature review was performed on the generic core competences (defined as knowledge, skills or attitudes) of HPRs (nurses, physical therapists (PTs) or occupational therapists (OTs)). Literature was obtained from electronic databases, published EULAR recommendations and via personal communication with representatives of national rheumatology societies and experts in the field. Qualitative, quantitative and mixed methods studies were included, and their methodological quality was scored using appropriate instruments. Results: From 766 references reviewed, 79 fulfilled the inclusion criteria. Twenty studies addressed competences of multiple HPRs: 15 were of qualitative design, 1 quantitative, 1 mixed-methods, 2 systematic reviews and 1 opinion paper. The methodological quality of most studies was medium to high. Five studies concerned the development of a comprehensive set of competences. Key competences included: basic knowledge of rheumatic diseases, holistic approach to patient management, effective communication with colleagues and patients and provision of education to patients. The proposed competences were confirmed in studies focusing on one or more specific competences, on a rheumatic disease or on a specific profession (nurses, PTs or OTs). Conclusion: Generic competences were identified for HPRs. Data were mostly derived from qualitative studies. All identified studies varied and were at national level, highlighting the need for the harmonisation of HPR competences across Europe. These findings underpin the development of EULAR recommendations for the core competences of HPRs.

2018 EULAR recommendations for physical activity in people with inflammatory arthritis and osteoarthritis.

Regular physical activity (PA) is increasingly promoted for people with rheumatic and musculoskeletal diseases as well as the general population. We evaluated if the public health recommendations for PA are applicable for people with inflammatory arthritis (iA; Rheumatoid Arthritis and Spondyloarthritis) and osteoarthritis (hip/knee OA) in order to develop evidence-based recommendations for advice and guidance on PA in clinical practice. The EULAR standardised operating procedures for the development of recommendations were followed. A task force (TF) (including rheumatologists, other medical specialists and physicians, health professionals, patient-representatives, methodologists) from 16 countries met twice. In the first TF meeting, 13 research questions to support a systematic literature review (SLR) were identified and defined. In the second meeting, the SLR evidence was presented and discussed before the recommendations, research agenda and education agenda were formulated. The TF developed and agreed on four overarching principles and 10 recommendations for PA in people with iA and OA. The mean level of agreement between the TF members ranged between 9.8 and 8.8. Given the evidence for its effectiveness, feasibility and safety, PA is advocated as integral part of standard care throughout the course of these diseases. Finally, the TF agreed on related research and education agendas. Evidence and expert opinion inform these recommendations to provide guidance in the development, conduct and evaluation of PA-interventions and promotion in people with iA and OA. It is advised that these recommendations should be implemented considering individual needs and national health systems.

Effects of exercise and physical activity promotion: meta-analysis informing the 2018 EULAR recommendations for physical activity in people with rheumatoid arthritis, spondyloarthritis and hip/knee osteoarthritis.

OBJECTIVE: To evaluate the effectiveness of exercise and physical activity (PA) promotion on cardiovascular fitness, muscle strength, flexibility, neuromotor performance (eg, balance) and daily PA in people with rheumatoid arthritis (RA), spondyloarthritis (SpA) and hip/knee osteoarthritis (HOA/KOA). METHODS: systematic review (SR) and meta-analysis (MA) were performed searching the databases PubMed/Medline, CENTRAL, Embase, Web of Science, Emcare and PsycInfo until April 2017. We included randomised controlled trials (RCTs) in adults (≥18 years) with RA, SpA and HOA/KOA, investigating the effects of exercise or PA promotion according to the public health PA recommendations by the American College of Sports Medicine. The time point of interest was the first assessment after the intervention period. If suitable, data were pooled in a MA using a random-effects model presented as standardised mean difference (SMD). RESULTS: The SR included 63 RCTs, of which 49 (3909 people with RA/SpA/HOA/KOA) were included in the MA. Moderate effects were found of aerobic exercises and resistance training on cardiovascular fitness (SMD 0.56 (95% CI 0.38 to 0.75)) and muscle strength (SMD 0.54 (95% CI 0.35 to 0.72)), respectively, but no effect of combined strength/aerobic/flexibility exercises on flexibility (SMD 0.12 (95% CI -0.16 to 0.41)). PA promotion interventions produced a small increase in PA behaviour (SMD 0.21 (95% CI 0.03 to 0.38)). CONCLUSION: Exercises and PA promotion according to public health recommendations for PA improved cardiovascular fitness, muscle strength and PA behaviour, with moderate effect sizes in people with SpA, RA and HOA/KOA. TRIAL REGISTRATION NUMBER: CRD42017082131.

Three-year trajectories of disability and fatigue in systemic sclerosis: a cohort study.

OBJECTIVES: Functional disability and fatigue are important consequences of systemic sclerosis (SSc), but little is known about their course over time. The aim of this study was to identify and characterise homogeneous subgroups with distinct 3-year trajectories of disability and fatigue, separately. METHODS: A 3-year cohort study including 215 patients with SSc was conducted. Functional disability was assessed using the Health Assessment Questionnaire-Disability Index (HAQ-DI). Fatigue was assessed using the SF-36 Vitality subscale. Longitudinal trajectories were identified using latent class growth analyses (LCGA). Baseline patient characteristics were compared across classes using multivariable logistic regression. RESULTS: Two disability classes were identified: a 'low' group (n=133) with low baseline HAQ-DI scores (intercept=0.48) and slight, statistically non-significant deterioration over time (slope=0.01), and a 'high' group (n=82) with high baseline HAQ-DI scores (intercept=1.63) and also slight, statistically non-significant deterioration over time (slope=0.01). Patients in the high disability group were more likely to be female, have higher fatigue, more helplessness, and less emotion-focused coping. Two fatigue classes were identified: an 'average' group (n=99) with average baseline Vitality scores (intercept=53.9) and slight, statistically non-significant deterioration over time (slope=-0.23), and a 'high' fatigue group (n=116) with low baseline Vitality scores (intercept=39.8) and also slight, but non-significant deterioration over time (slope=-0.15). Patients in the high fatigue group were more likely to be female, report more impact of lung involvement, and less acceptance. CONCLUSIONS: Functional disability and fatigue trajectories in SSc were relatively stable over a 3-year period, and differences in baseline scores, but not slopes, defined classes.

Educational needs of health professionals working in rheumatology in Europe.

OBJECTIVE: To explore the availability of postgraduate education for health professionals (HPs) working in rheumatology in Europe, and their perceived educational needs and barriers for participation in current educational offerings. METHODS: Structured interviews were conducted with national representatives of rheumatology HPs' organisations and an online survey among individual HPs was disseminated through existing European League Against Rheumatism (EULAR) networks (10 languages including English). These comprised questions on: availability of postgraduate education, familiarity with EULAR and its educational offerings, unmet needs regarding the contents and mode of delivery and potential barriers to participate in education (0-10 scales). RESULTS: According to 17 national representatives, postgraduate rheumatology education was most common for nurses, physical and occupational therapists. There were 1041 individuals responding to the survey, of whom 48% completed all questions. More than half (56%) were familiar with EULAR as an organisation, whereas <25% had attended the EULAR congress or were familiar with EULAR online courses. Educational needs regarding contents were highest for 'inflammatory arthritis' and 'connective tissue diseases' and regarding modes of delivery for 'courses organised in own country' and 'online courses'. Important barriers to participation included lack of 'resources', 'time' and 'English language skills'. Overall, there was considerable variation in needs and barriers among countries. CONCLUSIONS: There is a lack of postgraduate rheumatology education for HPs in most countries. There are opportunities to raise awareness regarding EULAR educational offerings and to develop courses provided in HPs' own country, tailored to national needs and barriers and taking language barriers into consideration.

Validity and responsiveness of the Michigan Hand Questionnaire in patients with systemic sclerosis.

OBJECTIVE: The aim was to assess the validity and responsiveness of the Michigan Hand Questionnaire (MHQ) in patients with SSc. METHODS: Data were gathered in connection with a randomized, controlled trial comparing the effectiveness of a 12-week multidisciplinary team care programme, including a hand function treatment module, with regular care. Hand function was evaluated by the MHQ (37 items, six domains: Function, Daily activities, Pain, Work, Aesthetics and Satisfaction) and other measurements, including the HAQ, Hand Mobility in Scleroderma, Sequential Occupational Dexterity Assessment (SODA), grip strength, pinch grip and modified Rodnan Skin Score. Fifty-three patients (28 intervention group and 25 control group) completed evaluation at baseline and after 12 weeks. Validity was determined by computing Spearman correlation coefficients between the baseline MHQ total score and subscales and other measures of (hand) disability. Responsiveness in the intervention group was evaluated by the standardized response mean and effect size (ES). In addition, the pooled ES for the difference between the two groups was computed. RESULTS: Significant correlations were seen between the MHQ total score and the HAQ (r = -0.62), Hand Mobility in Scleroderma (r = -0.54), SODA (r = 0.47), SODA Pain (r = 0.32) and modified Rodnan Skin Score (r = 0.46). The ES of the MHQ total score within the intervention group was 0.49, which was larger than that of all other outcome measures. Similar results were obtained for the standardized response mean. The pooled ES of the difference between intervention and control groups for the MHQ total score was 0.86. CONCLUSION: The MHQ demonstrated adequate validity and responsiveness in patients with SSc.

Therapeutic and diagnostic outcomes of a standardised, comprehensive care pathway for patients with systemic sclerosis.

OBJECTIVES: To determine the outcomes, including number of medical interventions and initiation of immunosuppressive treatment of a standardised, comprehensive, diagnostic care pathway for patients with systemic sclerosis (SSc). Patient characteristics associated with need for medical interventions and with need for immunosuppressive treatment were determined. METHODS: Data were routinely gathered in connection with a 2-day care pathway combining multidisciplinary care and complete diagnostic work-up of organ involvement in SSc. The number of patients in whom the pathway resulted in medical interventions, and/or initiation of immunosuppressives was recorded. Patient characteristics and diagnostic tests results were compared between patients with and without medical interventions, and patients with and without initiation of immunosuppressives by means of multivariable logistic regression analyses. RESULTS: During a period of 44 months, 226 patients with SSc were referred to the care pathway. They included 186 (82%) women with mean age of 54 (SD 14.5) years, and median disease duration of 4 years (range 1-11); 73 (32%) of them had diffuse cutaneous SSc. Medical interventions were initiated in 191 (85%) patients, including initiation of immunosuppressive treatment in n=49 (22%). Presence of telangiectasias and higher erythrocyte sedimentation rate were associated with any medical intervention. Of commonly available variables, lower age, higher skin score and absence of anticentromere antibody were associated with initiation of immunosuppressives. CONCLUSIONS: A standardised comprehensive 2-day care pathway for patients with SSc resulted in additional diagnostic or therapeutic interventions in 85% of the patients, regardless of SSc subtype and disease duration. In 22% of the patients, immunosuppressive treatment was initiated.

Content of non-pharmacological care for systemic sclerosis and educational needs of European health professionals: a EUSHNet survey.

OBJECTIVES: To describe the non-pharmacological care in systemic sclerosis (SSc) provided by European health professionals (HPs) including referrals, treatment targets, interventions, and educational needs. METHODS: In this observational study, European HPs working in SSc care were invited to complete an online survey through announcements by EUSTAR (European League Against Rheumatism (EULAR) Scleroderma Trials and Research) and FESCA (Federation of European Scleroderma Associations), the EULAR HPs' newsletter, websites of national patient and HP associations, and by personal invitation. RESULTS: In total, 56 HPs, from 14 different European countries and 7 different disciplines, responded to the survey. A total of 133 specific indications for referral were reported, 72% of which could be linked to the International Classification of Functioning, Disability and Health domain "body functions and structures". Of the 681 reported treatment targets 45% was related to "body functions and structures". In total, 105 different interventions were reported as being used to address these treatment targets. Almost all (98%) respondents reported having educational needs, with the topics of management of stiffness (67%), pain (60%), and impaired hand function (56%) being mentioned most frequently. CONCLUSIONS: Non-pharmacological care in SSc varies in Europe with respect to the content of interventions, reasons for referral, and treatment targets. Reasons for referral to HPs are not well-aligned to HPs subsequent treatment targets in SSc care suggesting suboptimal communication between physicians and HPs. The wide variations reported indicate a need to consolidate geographically disparate expertise within countries and to develop and improve standards of non-pharmacological care in SSc.