The overturn of Roe v. Wade beyond abortion: a snapshot of methotrexate accessibility for people with rheumatic and musculoskeletal diseases-a mixed methods study using Twitter data.

In June 2022, the Supreme Court of the United States (US) overturned the right established in Roe v. Wade to terminate a pregnancy. Subsequently, some states passed abortion ban laws prohibiting the use of abortive methods, including methotrexate (MTX), which has been a cornerstone drug in rheumatology. We aimed to explore and analyze Twitter data to comprehend the short-term implications of the overturn on rheumatology care. We conducted a mixed methods study using social media (SoMe) data. Tweets publicly posted using "#Methotrexate or Methotrexate" were tracked. A combination of SoMe performance data with qualitative hashtag co-occurrence analysis and content analysis was conducted. A total of 5180 posts were generated and reached approximately 40 million users. Seventy-three percent of all publications came from the US. Females posted more than males. Additionally, the three pairs of hashtags with higher co-occurrence were: #roevswade, #abortionishealthcare, and #rheumatoidarthritis. From the content analysis, three main themes were generated: (i) violence against women, (ii) health policy without public health intelligence, and (iii) call for strategic alliances in favor of public health. The combination of biological sex and state of residence could condition the use of MTX. Men will be able to continue their treatment; however, women could lose continuity of it. Inequity in access to treatment is a political decision, just as it is to reproduce inequities and vulnerabilities through the actions taken. Not having access to MTX for rheumatic and musculoskeletal diseases (RMDs) is a critical issue that endangers the physical and mental health of people with RMDs.

Patient perspectives on long-term outcomes in rheumatoid arthritis. A qualitative study from the OMERACT patient outcomes in longitudinal studies working group.

OBJECTIVES: To identify patient-centered domains with long-term relevance to people with rheumatoid arthritis (RA). METHODS: We conducted semi-structured individual cognitive interviews of patients with RA with at least five years of disease duration, sampled from five different countries (United States, Italy, Spain, Mexico, and Argentina). Participants were encouraged to discuss their long-term concerns regarding RA. Interviews were transcribed and analyzed using qualitative content analysis within a constructivist/interpretivist theoretical framework. RESULTS: Twenty-eight participants were interviewed, 24 were women. Six main themes, representing important aspects of the daily life of people with RA were generated: (i) Living with symptoms and functional limitations, (ii) Lack of participation, (iii) Partner and family issues, (iv) Risk of damage to vital organs, (v) Coping strategies, and (vi) Healthcare concerns, primarily expressed by participants from non-European countries lacking universal healthcare coverage. In addition, participants discussed the importance of contextual factors and how they impact long-term outcomes. These included attitudes towards disease, social support, or financial burdens. CONCLUSIONS: We identified six domains of importance to people with RA that are seldom measured in longitudinal registries and should be considered in patient-centered longitudinal studies.

Development of a patient-centered core domain set for prospective observational longitudinal outcome studies in rheumatoid arthritis: an OMERACT initiative.

OBJECTIVES: To identify patient-centered core domains for prospective longitudinal observational studies (LOS) in rheumatoid arthritis. METHODS: Our working group held a virtual meeting in November 2020 to review data from a literature review and patient qualitative interviews, and to discuss strategies to move forward on domain identification and selection using the OMERACT 2.1 domain selection process. RESULTS: Important candidate domains and subdomains were identified including in the areas of life impact. Consensus was reached on moving forward with a Delphi process. CONCLUSIONS: The meeting provided future directions to identify and select a core set of domains for use in LOS.

Prevention, screening, assessing and managing of non-adherent behaviour in people with rheumatic and musculoskeletal diseases: systematic reviews informing the 2020 EULAR points to consider.

OBJECTIVE: To analyse how non-adherence to prescribed treatments might be prevented, screened, assessed and managed in people with rheumatic and musculoskeletal diseases (RMDs). METHODS: An overview of systematic reviews (SR) was performed in four bibliographic databases. Research questions focused on: (1) effective interventions or strategies, (2) associated factors, (3) impact of shared decision making and effective communication, (4) practical things to prevent non-adherence, (5) effect of non-adherence on outcome, (6) screening and assessment tools and (7) responsible healthcare providers. The methodological quality of the reviews was assessed using AMSTAR-2. The qualitative synthesis focused on results and on the level of evidence attained from the studies included in the reviews. RESULTS: After reviewing 9908 titles, the overview included 38 SR on medication, 29 on non-pharmacological interventions and 28 on assessment. Content and quality of the included SR was very heterogeneous. The number of factors that may influence adherence exceed 700. Among 53 intervention studies, 54.7% showed a small statistically significant effect on adherence, and all three multicomponent interventions, including different modes of patient education and delivered by a variety of healthcare providers, showed a positive result in adherence to medication. No single assessment provided a comprehensive measure of adherence to either medication or exercise. CONCLUSIONS: The results underscore the complexity of non-adherence, its changing pattern and dependence on multi-level factors, the need to involve all stakeholders in all steps, the absence of a gold standard for screening and the requirement of multi-component interventions to manage it.

Core Outcome Sets Specifically for Longterm Observational Studies: OMERACT Special Interest Group Update in Rheumatoid Arthritis.

OBJECTIVE: This is an update from the Outcome Measures in Rheumatology (OMERACT) Core Outcomes in Longterm Observational Studies Special Interest Group with a focus on rheumatoid arthritis. METHODS: Preliminary data and proposed next steps were outlined and discussed by participants. RESULTS: Domains identified after initial steps (systematic review and qualitative research) were pain, physical functioning, participation (i.e., work, social), longterm symptoms, fertility/family planning, emotional well-being, coping, financial status, and adverse events including death. CONCLUSION: The group agreed conceptually that short-term core outcomes could be different from longer term ones. Participants emphasized the importance of analyzing the need for core domains specifically for longterm longitudinal observational studies.

#EULAR2018: The Annual European Congress of Rheumatology-a Twitter hashtag analysis.

The objective of this study was to explore the hashtag #EULAR2018 on Twitter during the period of the European League Against Rheumatism (EULAR) Annual European Congress to better comprehend the implications and patterns of social media (SM) data and their possible impact on users interested in rheumatic and musculoskeletal diseases. A mixed methods study combining SM performance data with qualitative content analysis of tweets was conducted. All the tweets publicly posted with #EULAR2018 were tracked using Symplur™ and Keyhole. Parameters such as number of users, engagement, reach, impressions, gender, source used to tweet, type of post, countries, trending topics, and main themes were analyzed. A total of 10,431 tweets using #EULAR2018 were tracked. Most of them were original and reached by > 2,950,000 users. Some of the retweets came from non-attendees to the congress. Males tweeted more than females; however, this gender disparity was not notable among the influential users. "Patients" were identified as the key topic. Sharing knowledge from the in situ congress, marketing or advertising, and sharing experiences or thoughts were identified as the main themes. Some dissonances between EULAR discourse and behavior that require further attention were identified. The EULAR congress is a staggering source of information with the potential of generating debate and promoting new practices in the rheumatology field, regardless of the place of origin of the users exposed to it, or whether or not the users attended the congress. EULAR should recognize the value and power of these data and incorporate them in the benchmarking of challenges and opportunities for the organization.

Exploring the remission concept in rheumatoid arthritis with patients and rheumatologists: time for a new approach?

OBJECTIVES: To explore the remission concept in rheumatoid arthritis (RA) and to compare remission definitions and related concepts between rheumatologists and patients with the purpose of identifying similarities and disparities to comprehend the different perspectives of the disease. METHODS: This was a qualitative study of discourse and content analysis through focus groups, conducted from February to March 2016. Four focus groups were set up, each one with different interests: rheumatologists involved in basic research (BR), rheumatologists with high specialisation in imaging techniques (IR), clinical rheumatologists (CR), and patients (PA). RESULTS: There is no consensus in a remission definition in RA; differences exist between-groups, rheumatologists and patients value remission differently, and there are discrepancies within the group of rheumatologists. Rheumatologists highlight quantifiable objective parameters, in contrast, patients did not consider objective measures as the best instruments, and they prefer subjective measures of remission. The data confirmed the existence of two sources of knowledge of the disease, technical (physicians) and experiential (patients). These sources of knowledge should concur in order to establish new remission criteria well-adjusted to reality. CONCLUSIONS: The lack of consensus between key groups implicated in defining remission and remission criteria suggests a new strategy for its operational definition. Our group proposes that subjects with a balance between experiential and technical knowledge, should be the ones in charge of this assignment.