"I couldn't carry on taking a drug like that": A qualitative study of patient perspectives on side effects from rheumatology drugs.

OBJECTIVES: There is growing interest in collecting outcome information directly from patients in clinical trials. This study evaluates what patients with rheumatic and musculoskeletal diseases (RMDs) consider important to know about symptomatic side effects they may experience from a new prescription drug. METHODS: Patients with inflammatory arthritis, who had one or more prescribed drugs for their disease for at least 12 months, participated in focus groups and individual interviews. Discussions were analysed using reflexive thematic analysis. RESULTS: We conducted seven focus groups with 34 participants across three continents. We found four overarching and two underpinning themes. The 'impact on life' was connected to participants 'daily life', 'family life', 'work life', and 'social life'. In 'psychological and physical aspects' participants described 'limitation to physical function', 'emotional dysregulation' and 'an overall mental state'. Extra tests, hospital visits and payment for medication were considered a 'time, energy and financial burden' of side effects. Participants explained important measurement issues to be 'severity', 'frequency', and 'duration'. Underpinning these issues, participants evaluated the 'benefit-harm-balance' which includes 'the cumulative burden' of having several side effects and the persistence of side effects over time. CONCLUSIONS: In treatment for RMDs, there seems to be an urgent need for feasible measures of patient-reported bother (impact on life and cumulative burden) from side effects and the benefit-harm-balance. These findings contribute new evidence in support of a target domain-an outcome that represents the patient voice evaluating the symptomatic treatment-related side effects for people with RMDs enrolled in clinical trials.

Patients' perspectives on systemic sclerosis-related Raynaud's phenomenon in the feet: A qualitative study from the OMERACT Foot and Ankle Working Group.

OBJECTIVE: To explore, from patients' perspectives, the symptoms and impact of Raynaud's phenomenon (RP) on the feet of patients with systemic sclerosis (SSc-RP), and to identify which foot-related domains are important to patients. METHODS: Forty participants (34 women) with SSc-RP took part in one of six focus groups held in the United Kingdom or United States. Participants were purposively sampled to ensure diversity in disease type, duration, and ethnicity. The topic guide included questions on RP impact, self-management, and treatment expectations. Qualitative content analysis was employed to identify key concepts in the data relating to foot-specific symptoms and their impact. Themes were organized by corresponding domains of potential importance. RESULTS: Twenty-eight participants (70 %) reported experiencing RP in their feet. Five themes were identified corresponding to domains of potential importance: temperature changes, pain, cramping and stiffness, numbness, and color changes. These issues negatively affected participants' lives, impairing walking, driving, and socializing, and causing issues with footwear and hosiery. CONCLUSIONS: This large qualitative study exploring the experiences of patients with SSc-RP in the feet identified several key domains of high importance to patients. SSc-RP is common in the feet, presents in several patterns, and impacts multiple aspects of patients' lives. These findings indicate where future foot-specific interventions for RP could be targeted. Findings from this study improve understanding of what domains are important to patients with SSc-RP affecting the feet and will contribute to the development of a core outcome set for foot and ankle disorders in rheumatic and musculoskeletal diseases.

'Do I cry or just carry on': A story completion study of healthcare professionals' anticipated responses to experiencing chest pain.

Healthcare professionals may experience barriers to seeking healthcare that differ from the general population. We explored healthcare professionals' anticipated responses to experiencing chest pain following a period of stress using qualitative story completion method with healthcare professionals (n = 44). Data were analysed using reflexive thematic analysis, which identified three themes: '"Do I cry or just carry on?": A Culture of Suffering in Silence' identified worries that expressing health concerns would be perceived as weakness, with potential impact on career opportunities. Participants also described self-diagnosis and self-medication rather than help-seeking. '"Me? Have a panic attack?": Psychosomatic Shame' suggested mental health issues may be ignored due to stigma. '"We definitely don't take care of ourselves": Prioritising Pressures of Multiple Responsibilities over Self-care' identified real or perceived pressures to de-prioritise their health. Future research should explore the design of confidential, time efficient support for healthcare professionals that tackle cultural norms and barriers to self-care.

Nurse-led care for people with early rheumatoid arthritis: Interview study with thematic analysis.

AIMS: To develop an understanding of what comprises nurse-led care in early rheumatoid arthritis from the perspective of rheumatology nurse specialists in England. DESIGN: Qualitative study. METHODS: Semi-structured telephone interviews with rheumatology nurse specialists in England were conducted in Summer 2020. Interviews were audio-recorded, transcribed verbatim and analysed using reflexive thematic analysis. Reporting follows the appropriate elements of consolidated criteria for reporting qualitative research. RESULTS: Sixteen nurses were recruited and interviews lasted 30-60 min. Four themes with 14 subthemes were identified. A SPECIALIST SERVICE DELIVERED BY EXPERIENCED RHEUMATOLOGY NURSES: Specialist care is provided by experienced nurse specialists with a high degree of autonomy in the rheumatology multidisciplinary team context. ADDRESSING PATIENTS' COMPLEX CARE NEEDS: Care is evidence-based and aims to start treatment, keep in treatment, educate and support. Access to psychology expertise is needed. CARE WITH COMPASSION USING PERSON-CENTRED, HOLISTIC AND EMPATHETIC APPROACHES: Nurses create patient relationships and a positive therapeutic environment. Nurse-led telephone advice lines are essential for treatment adjustment, patient support and empowerment. CONTINUED EVALUATION AND DEVELOPMENT OF THE SERVICE: Consultations are reviewed, and patients are asked for feedback. The COVID-19 pandemic caused disruption, but changes streamlined procedures and improved documentation and communication. CONCLUSION: Nurse-led care in early rheumatoid arthritis is a specialist service delivered with compassion, addressing complex care needs and using person-centred approaches. This study identifies key aspects of care in early disease from the nurse perspective.

Developing a core outcome set for foot and ankle disorders in rheumatic and musculoskeletal diseases: A scoping review and report from the OMERACT 2022 foot and ankle special interest group session.

OBJECTIVES: Foot and ankle involvement is common in rheumatic and musculoskeletal diseases, yet high-quality evidence assessing the effectiveness of treatments for these disorders is lacking. The Outcome Measures in Rheumatology (OMERACT) Foot and Ankle Working Group is developing a core outcome set for use in clinical trials and longitudinal observational studies in this area. METHODS: A scoping review was performed to identify outcome domains in the existing literature. Clinical trials and observational studies comparing pharmacological, conservative or surgical interventions involving adult participants with any foot or ankle disorder in the following rheumatic and musculoskeletal diseases (RMDs) were eligible for inclusion: rheumatoid arthritis (RA), osteoarthritis (OA), spondyloarthropathies, crystal arthropathies and connective tissue diseases. Outcome domains were categorised according to the OMERACT Filter 2.1. RESULTS: Outcome domains were extracted from 150 eligible studies. Most studies included participants with foot/ankle OA (63% of studies) or foot/ankle involvement in RA (29% of studies). Foot/ankle pain was the outcome domain most commonly measured (78% of studies), being the most frequently specified outcome domain across all RMDs. There was considerable heterogeneity in the other outcome domains measured, across core areas of manifestations (signs, symptoms, biomarkers), life impact, and societal/resource use. The group's progress to date, including findings from the scoping review, was presented and discussed during a virtual OMERACT Special Interest Group (SIG) in October 2022. During this meeting, feedback was sought amongst delegates regarding the scope of the core outcome set, and feedback was received on the next steps of the project, including focus group and Delphi methods. CONCLUSION: Findings from the scoping review and feedback from the SIG will contribute to the development of a core outcome set for foot and ankle disorders in RMDs. The next steps are to determine which outcome domains are important to patients, followed by a Delphi exercise with key stakeholders to prioritise outcome domains.

Living with foot and ankle disorders in rheumatic and musculoskeletal diseases: A systematic review of qualitative studies to inform the work of the OMERACT Foot and Ankle Working Group.

OBJECTIVES: This study aimed to determine outcome domains of importance to patients living with foot and ankle disorders in rheumatic and musculoskeletal diseases (RMDs), by exploring the symptoms and impact of these disorders reported in existing qualitative studies. METHODS: Six databases were searched from inception to March 2022. Studies were included if they used qualitative interview or focus group methods, were published in English, and involved participants living with RMDs (inflammatory arthritis, osteoarthritis, crystal arthropathies, connective tissue diseases, and musculoskeletal conditions in the absence of systemic disease) who had experienced foot and ankle problems. Quality was assessed using the Critical Appraisal Skills Programme qualitative tool and confidence in the findings was assessed using the Grading of Recommendations Assessment, Development and Evaluation Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. All data from the results section of included studies were extracted, coded and synthesised to develop themes. RESULTS: Of 1,443 records screened, 34 studies were included, with a total of 503 participants. Studies included participants with rheumatoid arthritis (n = 18), osteoarthritis (n = 5), gout (n = 3), psoriatic arthritis (n = 1), lupus (n = 1), posterior tibial tendon dysfunction (n = 1), plantar heel pain (n = 1), Achilles tendonitis (n = 1), and a mixed population (n = 3), who live with foot and ankle disorders. Seven descriptive themes were generated from the thematic synthesis: pain, change in appearance, activity limitations, social isolation, work disruption, financial burden and emotional impact. Descriptive themes were inductively analysed further to construct analytical themes relating to potential outcome domains of importance to patients. Foot or ankle pain was the predominant symptom experienced by patients across all RMDs explored in this review. Based on grading of the evidence, we had moderate confidence that most of the review findings represented the experiences of patients with foot and ankle disorders in RMDs. CONCLUSIONS: Findings indicate that foot and ankle disorders impact on multiple areas of patients' lives, and patients' experiences are similar regardless of the RMD. This study will inform the development of a core domain set for future foot and ankle research and are also useful for clinicians, helping to focus clinical appointments and measurement of outcomes within clinical practice.

Developing an Outcome Measures in Rheumatology (OMERACT) Core set of Outcome Measures for FOot and ankle disorders in RheumaTic and musculoskeletal diseases (COMFORT): core domain set study protocol.

BACKGROUND: Foot and ankle involvement is common in rheumatic and musculoskeletal diseases (RMDs). High-quality evidence is lacking to determine the effectiveness of treatments for these disorders. Heterogeneity in the outcomes used across clinical trials and observational studies hinders the ability to compare findings, and some outcomes are not always meaningful to patients and end-users. The Core set of Outcome Measures for FOot and ankle disorders in RheumaTic and musculoskeletal diseases (COMFORT) study aims to develop a core outcome set (COS) for use in all trials of interventions for foot and ankle disorders in RMDs. This protocol addresses core outcome domains (what to measure) only. Future work will focus on core outcome measurement instruments (how to measure). METHODS: COMFORT: Core Domain Set is a mixed-methods study involving the following: (i) identification of important outcome domains through literature reviews, qualitative interviews and focus groups with patients and (ii) prioritisation of domains through an online, modified Delphi consensus study and subsequent consensus meeting with representation from all stakeholder groups. Findings will be disseminated widely to enhance uptake. CONCLUSIONS: This protocol details the development process and methodology to identify and prioritise domains for a COS in the novel area of foot and ankle disorders in RMDs. Future use of this standardised set of outcome domains, developed with all key stakeholders, will help address issues with outcome variability. This will facilitate comparing and combining study findings, thus improving the evidence base for treatments of these conditions. Future work will identify suitable outcome measurement instruments for each of the core domains. TRIAL REGISTRATION: This study is registered with the Core Outcome Measures in Effectiveness Trials (COMET) database, as of June 2022: https://www.comet-initiative.org/Studies/Details/2081.

'I turned in my man card': a qualitative study of the experiences, coping styles and support needs of men with systemic sclerosis.

OBJECTIVES: Men with SSc have a more severe clinical phenotype and reduced survival compared with women. No previous psychosocial studies have focused solely on men with SSc. This study aimed to explore experiences, coping strategies and support preferences of men with SSc. MATERIAL AND METHODS: An international qualitative research study comprising seven focus groups (three USA, four UK) of 25 men with SSc. Transcripts were analysed using reflexive thematic analysis. RESULTS: Three overarching themes and one underpinning theme were identified. In 'impact of SSc on masculinity', the men described an 'impact on roles and activities', reported 'sex, intimacy, and erectile dysfunction' as a salient issue that may be overlooked by clinicians, and experienced challenges to 'masculine self-image'. 'Dealing with SSc' meant 'always being prepared', 'becoming an expert' and 'balancing priorities' in responsibilities, activities and symptom management. In 'support for living with SSc' men were selective in '(Not) talking about SSc', would '(reluctantly) accept help' and described 'preferences for support'. Underpinning these experiences was 'facing an uncertain future' with some participants preferring not to focus on an unpredictable future, and others worrying about disease progression. CONCLUSION: These novel data suggest SSc impacts male patients' masculine identity and roles, and although they will accept practical help, they may mask the full emotional impact. Sex and intimacy are important overlooked issues with erectile dysfunction often not discussed at diagnosis. Further research should develop a self-management intervention for men with rheumatic diseases with a combination of disease-specific and common core components.

Defining independence: A scoping review by the OMERACT patient perspective of remission in rheumatoid arthritis group.

AIMS: The Outcome Measures in Rheumatology Trials (OMERACT) Remission in Rheumatoid Arthritis (RA) patient perspective working group has previously found that patients prioritised independence, pain, and fatigue as key domains of remission in RA. However, there is currently no clear definition of independence. Consequently, this scoping review aimed to explore how independence is represented in the RA literature. METHODS: A comprehensive search of the EMBASE, Medline, and PsycInfo databases was performed for publications that used independence or autonomy as a disease activity measure, description of disease in remission or treatment outcome. Papers were included if they involved adult participants and were written in English, with no restrictions on study design or publication year. Two reviewers (TK and AC, AT or BJ) independently screened the abstracts. A thematic approach was applied to derive common definitions and descriptions of independence. RESULTS: 660 articles were identified, of which 58 (25 qualitative, 28 quantitative, one mixed, and four reviews) met the inclusion criteria. 86% of total participants were female. Ten publications referenced remission. Independence took many forms; in addition to physical and functional capability, it was described in relation to work, social activities, autonomy in healthcare, and household activities. Four common themes describing independence were identified: 1. A return to a state before arthritis. 2. Being physically and functionally able. 3. A sense of freedom without needing to rely on others. 4. Having control over the organisation of one's life. CONCLUSION: Although independence is frequently mentioned in the RA literature, it has various meanings, lacks a consistent definition, and is a concept rarely applied to remission. It is multi-factorial, exceeding functional ability alone, and contextualised within sociodemographic and disease factors. This scoping review provides common descriptions of independence to inform future qualitative work towards the development of an outcome measure of independence for the assessment of RA in remission.

Considerations and priorities for incorporating the patient perspective on remission in rheumatoid arthritis: An OMERACT 2020 special interest group report.

OBJECTIVE: To determine how best to incorporate the patient perspective into rheumatoid arthritis remission criteria. METHODS: At OMERACT 2020, several studies, including a longitudinal multi-centre study testing the validity of adding patient-valued domains to the ACR/EULAR criteria, were presented and discussed by the virtual Special Interest Group. RESULTS: Overall consensus was that there is insufficient evidence to change the remission criteria at this point. Future work should focus on measurement of the new domain of independence, clarifying the value of the patient global assessment, and optimizing the input of domains that patients value in the criteria. CONCLUSION: Incorporating the patient perspective into remission criteria should be further explored.

Preferences for Self-Management and Support Services in Patients With Inflammatory Joint Disease: A Danish Nationwide Cross-Sectional Study.

OBJECTIVE: To explore preferences for self-management and support services in patients with inflammatory joint disease (IJD) and to investigate whether these preferences differ by age, sex, diagnosis, and disease duration. METHODS: We used a nationwide cross-sectional online survey for patients with rheumatoid arthritis, psoriatic arthritis, and axial spondyloarthritis. Descriptive statistics were applied to explore preferences and to test for differences according to the different subgroups of patients. RESULTS: The questionnaire was completed by 664 patients. Younger patients indicated greater interest in 1-to-1 discussions with psychologists or another patient, educational sessions, events, and online services, and older patients indicated greater interest in talks by researchers. More women than men indicated interest in health professionals' 1-to-1 discussions, occupational therapists' question-and-answer (Q and A) sessions, physical activity, and informational websites. Patients with axial spondyloarthritis tended to indicate the most interest in the different services, and patients with rheumatoid arthritis the least interest, reaching statistical significance regarding discussion groups about IJD experiences, 1-to-1 discussions with psychologists or another patient, Q and A with another patient, stress/anger management, and online patient communication. More patients with short rather than long disease duration indicated interest in 1-to-1 discussions with rheumatologists or nurses, organized talks with experienced patients, and online services for patient communication and stories. CONCLUSION: Patients with IJD report various needs regarding self-management and support services, including 1-to-1 services traditionally delivered as part of usual care, but also talks, physical activity, and educational and online services. Although preferences differed across age, sex, diagnosis, and disease duration, all subgroups indicated great need for support, with only small differences in their top preferences.

The patient perspective of nurse-led care in early rheumatoid arthritis: A systematic review of qualitative studies with thematic analysis.

INTRODUCTION: Management of rheumatoid arthritis has changed dramatically over the last decade and is characterised by early start of intensive treatment and tight monitoring of disease activity until remission. The role of nurse-led care at early stage of disease is not well understood. AIMS: To develop an understanding of rheumatology nurse-led care from the perspective of patients with early rheumatoid arthritis. METHODS: A systematic review of qualitative studies, reported in line with PRISMA checklist. In March 2019, the following databases were searched: MEDLINE, EMBASE, CINAHL, PsycINFO and OpenGrey. Studies were included if they: included adults with rheumatoid arthritis; were qualitative studies with data on patients' perspectives of nurse-led care; and published in peer-reviewed journals, in English, between 2010-2019. Due to few studies in early rheumatoid arthritis, inclusion was extended to adults with established rheumatoid arthritis. Two reviewers screened abstracts and full texts. Joanna Briggs Institute Critical Appraisal Tool was used for quality assessment. Thematic synthesis was conducted according to the framework of Thomas and Harden (2008). RESULTS: The search identified 1034 records. After screening and assessing for eligibility, eight qualitative studies were included in the review (133 patients). Three themes were identified from the synthesis. Nurse-led care was seen to provide professional expertise in planning and delivery of care. A person-centred approach was used combined with good communication skills, thus creating a positive therapeutic environment. Nurse-led care was described as providing a sense of empowerment and psychological support. CONCLUSION: Patients with rheumatoid arthritis are supportive of nurse-led care. They value its professionalism and person-centred approach which provide a sense of security and confidence. RELEVANCE TO CLINICAL PRACTICE: The findings outline ingredients of nurse-led care that are important to patients. These can inform nurses' professional development plans, service improvement and the competence framework for rheumatology nursing.

The OMERACT Emerging Leaders Program: The Good, the Bad, and the Future.

OBJECTIVE: To describe the experience of the first OMERACT Emerging Leaders Program (ELP). METHODS: A Delphi process identified positive aspects, areas for improvement, and future directions. Core items were defined as essential if they received ≥ 70% ratings. RESULTS: Participants valued relatable/accessible mentors (100%), including an OMERACT Executive mentor (100%), and a support network of peers (90%). Key items for future development were funding support (100%) and developing knowledge about OMERACT processes (90%) and politics (80%). CONCLUSION: The ELP has the potential to provide targeted training for early career researchers to develop relevant skills for future leadership roles within OMERACT.

Coping Strategies, Psychological Impact, and Support Preferences of Men With Rheumatoid Arthritis: A Multicenter Survey.

OBJECTIVE: To investigate the existence and distribution of 2 typologies (termed "factors") of men with rheumatoid arthritis (RA) identified through our previous Q-methodology study (n = 30) in a larger sample of men with RA, and whether differences in psychosocial impact or support preferences exist between the 2 factors, and between men and women with RA. METHODS: A postal survey was sent to 620 men with RA from 6 rheumatology units across England, and the support preferences section of the survey was given to 232 women with RA. RESULTS: A total of 295 male patients (47.6%) and 103 female patients (44.4%) responded; 15 male participants had missing data, and thus 280 were included in the analysis. Of these, 61 (22%) were assigned to factor A ("accept and adapt"), 120 (35%) were assigned to factor B ("struggling to match up"), and 99 (35%) were unassigned. The two factors differed significantly, with factor B reporting more severe disease, less effective coping strategies, and poorer psychological status. For support, men favored a question and answer session with a consultant (54%) or specialist nurse (50%), a website for information (69%), a talk by researchers (54%), or a symptom management session (54%). Overall, women reported more interest in support sessions than men, with ≥50% of women reporting interest in nearly every option provided. CONCLUSION: Some men accept and adapt to their RA, but others (43%) report severe disease, less effective coping, and poor psychological status. Men's preferences for support are practical, with a focus on expanding their knowledge.

An OMERACT Initiative Toward Consensus to Identify and Characterize Candidate Contextual Factors: Report from the Contextual Factors Working Group.

OBJECTIVE: The importance of contextual factors (CF) for appropriate patient-specific care is widely acknowledged. However, evidence in clinical trials on how CF influence outcomes remains sparse. The 2014 Outcome Measures in Rheumatology (OMERACT) Handbook introduced the role of CF in outcome assessment and defined them as "potential confounders and/or effect modifiers of outcomes in randomized controlled trials." Subsequently, the CF Methods Group (CFMG) was formed to develop guidance on how to address CF in clinical trials. METHODS: First, the CFMG conducted an e-mail survey of OMERACT working groups (WG) to analyze how they had addressed CF in outcome measurement so far. The results facilitated an informed discussion at the OMERACT 2016 CFMG Special Interest Group (SIG) session, with the aim of gaining preliminary consensus regarding an operational definition of CF and to make a first selection of potentially relevant CF. RESULTS: The survey revealed that the WG had mostly used the OMERACT Handbook and/or the International Classification of Functioning, Disability and Health (ICF) definition. However, significant heterogeneity was found in the methods used to identify, refine, and categorize CF candidates. The SIG participants agreed on using the ICF as a framework along with the OMERACT Handbook definition. A list with 28 variables was collected including person-related factors and physical and social environments. Recommendations from the SIG guided the CFMG to formulate 3 preliminary projects on how to identify and analyze CF. CONCLUSION: New methods are urgently needed to assist researchers to identify and characterize CF that significantly influence the interpretation of results in clinical trials. The CFMG defined first steps to develop further guidance.

"You Obviously Just Have to Put on a Brave Face": A Qualitative Study of the Experiences and Coping Styles of Men With Rheumatoid Arthritis.

OBJECTIVE: To explore the experiences, coping styles, and support preferences of male rheumatoid arthritis (RA) patients. METHODS: Six focus groups comprised 22 men with RA. Transcripts were analyzed using inductive thematic analysis. RESULTS: Three overarching themes describe the experiences, coping styles, and support preferences of men with RA. In "challenges to masculinity," the men described a "reduction in strength and abilities," which can lead to loss of independence, "challenges to masculine identity and role," and "loss of power and control." Coping by "getting through life with RA" meant dealing with RA by "just getting on with it," "information seeking," engaging in "destructive behaviors," and "withdrawing socially." Preferred "sources of support" tended not to include friends, as they were perceived to lack understanding or support. For acceptable support the men reported a preference for information-giving sessions rather than a discussion group, but there was no agreement on whether these should be mixed-sex or men only, or who should run the sessions. CONCLUSION: Male patients reported a range of coping styles and support preferences to address their experiences of living with RA, many of which may not be shared with women. Further research is needed to investigate whether these findings exist in a larger sample and whether the support preferences of men with RA are broadly different from those of women with RA to decide whether there is a clinical need to design a service for the potentially different needs of men.

Identifying different typologies of experiences and coping strategies in men with rheumatoid arthritis: a Q-methodology study.

OBJECTIVE: To identify typologies of experiences and coping strategies of men with rheumatoid arthritis (RA). DESIGN: Q-methodology (a qualitative and quantitative approach to grouping people according to their subjective opinion). Men with RA sorted 64 statements relating to their experience of living with RA according to level of agreement across a normal distribution grid. Data were examined using Q-factor analysis. SETTING: Rheumatology outpatient departments in the UK. PARTICIPANTS: 30 of 65 invited men with RA participated in this study (46%). RESULTS: All participants ranked highly the need to be well informed about their medication and the importance of keeping a positive attitude. 2 factors describing the experiences and coping strategies of male patients living with RA were identified: factor A: 'acknowledge, accept and adapt' (n=14) take a proactive approach to managing the impact of RA and find different ways of doing things; while factor B: 'trying to match up to a macho ideal' (n=8) are determined to continue with their pre-RA lives, and therefore push themselves to carry on even if this causes them pain. They are frustrated and angry due to the impact of RA but they internalise this rather than directing it at others. CONCLUSIONS: While some men adapt to their RA by renegotiating their masculine identity, others struggle to relinquish their traditional masculine roles. Further research is needed to identify whether the finding that there are 2 distinct groups of men with RA can be generalised, and if so whether the differences can be explained by clinical, social or psychological factors, which may inform different therapeutic approaches.

Men, rheumatoid arthritis, psychosocial impact and self-management: A narrative review.

Rheumatoid arthritis is a chronic disease affecting fewer men than women. We systematically reviewed the literature on impact and self-management of rheumatoid arthritis in men. A total of 28 papers were included and grouped into two categories: psychosocial impact of rheumatoid arthritis, and coping and self-management. This review finds gender differences relating to quality of life, work, distress, self-management, coping and support. We conclude that there is a dearth of literature focussing on rheumatoid arthritis in men only, and mixed gender studies include insufficient men to draw strong conclusions about men. Thus, further research is needed to understand the support needs of men with rheumatoid arthritis in depth.

The Spirit of OMERACT: Q Methodology Analysis of Conference Characteristics Valued by Delegates.

OBJECTIVE: To identify the major features of OMERACT meetings as valued by frequent participants and to explore whether there are groups of participants with different opinions. METHODS: Using Q methodology (a qualitative and quantitative approach to grouping people according to subjective opinion), participants (who attended more than 1 OMERACT conference) sorted 66 statements relating to the "spirit of OMERACT" according to level of agreement across a normal distribution grid. Data were examined using Q factor analysis. RESULTS: Of 226 potential participants, 105 responded (46%). All participants highly ranked the focus on global standardization of methods, outcome measures, data-driven research, methodological discussion, and international collaboration. Four factors describing the "spirit of OMERACT" were identified: "Evidence not eminence" (n = 31) valued the data- and evidence-driven research above personality and status; "Collaboration and collegiality" (n = 19) valued the international and cross-stakeholder collaboration, interaction, and collegiality; "Equal voices, equal votes, common goals" (n = 12) valued equality in discussion and voting, with everyone striving toward the same goal; "principles and product, not process" (n = 8) valued the principles of focusing on outcome measures and the product of guiding clinical trials, but were unsure whether the process is necessary to reach this. The factors did not segregate different stakeholder groups. CONCLUSION: Delegates value different elements of OMERACT, and thus the "spirit of OMERACT" encompasses evidence-based research, collaboration, and equality, although a small group are unsure whether the process is necessary to achieve the end result. Q methodology may prove useful for conference organizers to identify their delegates' different needs to tailor conference content.