Explore the vast range of titles available.

IntroductionAlthough patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.MethodsA multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still’s disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18–35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.ResultsFifty-three patients (21 with RA/JIA/Still’s, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.ConclusionsDespite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.

Correspondence to Dr Paul Studenic; paul.studenic@meduniwien.ac.at A range of patient-reported outcome measures (PROMs) with different features is available for people with inflammatory arthritis (IA).1–5 However, the needs and priorities of young people (aged 18–35 years) with IA regarding PROMs and their administration have never been systematically explored. [...]our project tackled the question whether PROMs commonly used in IA cover the perspectives and needs of young people. For this purpose, a task force (TF) guided by the 2014 EULAR Standardised Operating Procedures was convened.6 Given the limited literature on the perspectives of young people with IA regarding PROMs, a multinational focus group study7 and a subsequent online survey distributed across Europe8 replaced the conventional systematic literature review (online supplemental figure S1). Every TF member indicated agreement with a PtC or OP by formal voting (yes/no/abstain) during the second meeting and then anonymously scored their level of agreement (Numerical Rating Scale ranging from 0=‘no agreement’ to 10=‘absolute agreement’) after the meeting in a subsequent email round.6 OPs and PtC focused on the preferences of young patients with IA regarding the value of PROMs for shared decision making and monitoring, their content and mode of administration.Table 1 Overarching principles and points to consider for including the perspective of young patients with IA into PROMs Overarching principles LoA Mean (SD) A IA has a considerable impact on all aspects of the life of young people, and PROMs are useful to measure part of this impact 9.69 (±0.63), 100%≥8 B The value of PROMs is optimised when young people with IA are informed and empowered 9.92 (0.28), 100%≥8 C PROMs are useful when integrated in the communication between young people with IA and rheumatologists/other health professionals who are involved in their care. 9.77 (0.44), 100%≥8 D PROMs inform shared decision-making for young people with IA. 9.31 (0.18), 92%≥8 Points to consider LoE Strength of recommendation LoA Mean (SD) 1 Young people with IA should be informed about the purpose and relevance of PROMs. 5 D 9.85 (0.37), 100%≥8 2 Young people with IA should have the possibility to access their personal PROM data. 5 D 9.31 (1.18), 85%≥8 3 Healthcare providers and young people with IA should discuss the results of PROMs and integrate them into shared decision making. 5 D 9.78 (0.44), 100%≥8 4 Different PROMs assess various domains and should therefore be used to cover a broad spectrum of the disease. 5 D 9.15 (1.82), 85%≥8 5 Healthcare providers should ascertain the willingness of young people with IA to talk about issues such as body image and life plans, and discuss these domains respecting the patients’ preferences. 5 D 9.54 (1.13), 92%≥8 6 The assessment of a young person with IA should encompass items and domains of his/her daily life such as psychosocial issues, participation in social activities, education/work, sports and using technologic devices. 5 C 9.46 (1.20), 92%≥8 7 The schedule of PROMs assessment should be agreed on by the healthcare provider and the young person with IA, to balance frequency versus inconvenience. 5 D 9.46 (1.05), 92%≥8 8 Online and e-solutions for PROMs should be used when possible and convenient for young people with IA. 5 D 9.92 (0.28), 100%≥8 Numbers in the column ‘LoA’ indicate the mean (SD) of the LoA, and the percentage of task force members with a LoA of at least 8 (0–10); based on the Oxford Centre for Evidence-Based Medicine classification IA, inflammatory arthritis; LoA, level of agreement; LoE, level of evidence; PROMs, patient-reported outcome measures. Young people's perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR Task force.

A European League Against Rheumatism (EULAR) task force was established to define points to consider on use of antirheumatic drugs before pregnancy, and during pregnancy and lactation. Based on a systematic literature review and pregnancy exposure data from several registries, statements on the compatibility of antirheumatic drugs during pregnancy and lactation were developed. The level of agreement among experts in regard to statements and propositions of use in clinical practice was established by Delphi voting. The task force defined 4 overarching principles and 11 points to consider for use of antirheumatic drugs during pregnancy and lactation. Compatibility with pregnancy and lactation was found for antimalarials, sulfasalazine, azathioprine, ciclosporin, tacrolimus, colchicine, intravenous immunoglobulin and glucocorticoids. Methotrexate, mycophenolate mofetil and cyclophosphamide require discontinuation before conception due to proven teratogenicity. Insufficient documentation in regard to fetal safety implies the discontinuation of leflunomide, tofacitinib as well as abatacept, rituximab, belimumab, tocilizumab, ustekinumab and anakinra before a planned pregnancy. Among biologics tumour necrosis factor inhibitors are best studied and appear reasonably safe with first and second trimester use. Restrictions in use apply for the few proven teratogenic drugs and the large proportion of medications for which insufficient safety data for the fetus/child are available. Effective drug treatment of active inflammatory rheumatic disease is possible with reasonable safety for the fetus/child during pregnancy and lactation. The dissemination of the data to health professionals and patients as well as their implementation into clinical practice may help to improve the management of pregnant and lactating patients with rheumatic disease.

There is convincing evidence for the known and unambiguously accepted beneficial effects of glucocorticoids at low dosages. However, the implementation of existing recommendations and guidelines on the management of glucocorticoid therapy in rheumatic diseases is lagging behind. As a first step to improve implementation, we aimed at defining conditions under which long-term glucocorticoid therapy may have an acceptably low level of harm. A multidisciplinary European League Against Rheumatism task force group of experts including patients with rheumatic diseases was assembled. After a systematic literature search, breakout groups critically reviewed the evidence on the four most worrisome adverse effects of glucocorticoid therapy (osteoporosis, hyperglycaemia/diabetes mellitus, cardiovascular diseases and infections) and presented their results to the other group members following a structured questionnaire for final discussion and consensus finding. Robust evidence on the risk of harm of long-term glucocorticoid therapy was often lacking since relevant study results were often either missing, contradictory or carried a high risk of bias. The group agreed that the risk of harm is low for the majority of patients at long-term dosages of ≤5 mg prednisone equivalent per day, whereas at dosages of >10 mg/day the risk of harm is elevated. At dosages between >5 and ≤10 mg/day, patient-specific characteristics (protective and risk factors) determine the risk of harm. The level of harm of glucocorticoids depends on both dose and patient-specific parameters. General and glucocorticoid-associated risk factors and protective factors such as a healthy lifestyle should be taken into account when evaluating the actual and future risk.

In recent years, the evolution of healthcare challenged the management of people with rheumatic and musculoskeletal diseases (RMDs). From disease-centred care to person-focused care, a holistic approach along with patient empowerment about their disease, improved the physician-patient relationship and allowed to achieve better outcomes with lower healthcare costs. Nevertheless, RMDs may occur from childhood to the old age and to date very few studies have addressed the needs and priorities of young people with RMDs. However, the image of RMDs is still associated with the elderly population. In this regard, the group of young people with arthritis and rheumatism in Europe (PARE) was recently developed within European League Against Rheumatism to represent the voice of the young affected and to carry out projects aiming for a better understanding of these specific aspects. This viewpoint discusses the needs and priorities of young people compared with adult people with RMDs, based on the available literature and on the results of the PARE Youth research project, aiming to identify the next steps of actions that need to be taken to improve the current situation.