Coalition for Health and Gender Equity (CHANGE)-a protocol for a global cross-sectional survey of health and gender equity in rheumatology.

Objectives: The primary aim of the CHANGE survey is to determine the current state of gender equity within rheumatology, and secondarily, to review the physician perspective on bullying, harassment and equipoise of opportunities within rheumatology. Methods: The CHANGE e-survey is a cross-sectional self-reported questionnaire adapted from EULAR's gender equity in academic rheumatology task force. The survey was launched in January 2023; it is available in six languages and distributed widely via rheumatology organizations and social media. Eligible participants include rheumatologist physicians and rheumatology health-care professionals. Survey responses will undergo descriptive analysis and inter-group comparison aiming to explore gender-based discrimination using logistic regression, with subgroup analyses for country/continent variations. Conclusion: This e-survey represents a comprehensive global initiative led by an international consortium, aimed at exploring and investigating the gender-related disparities and obstacles encountered by rheumatologists and rheumatology health-care professionals across diverse communities and health-care environments. By pursuing this initiative, we aim to take the broader rheumatology community a step closer to understanding the underlying origins of inequities and their determinants. Such insights are pivotal in identifying viable interventions and strategies to foster gender equity within the field. Ultimately, our collective objective is to ensure equitable access to opportunities for every individual, irrespective of gender, thereby promoting inclusivity and fairness across the entire spectrum of professional practice and career development.

Gender parity perspectives in Asia Pacific: a descriptive analysis of Philippine rheumatology conferences.

Gender parity at conferences can facilitate progress in academia towards the attainment of gender equality as emphasized in the United Nations' Sustainable Development Goals. The Philippines is a low to middle-income country in the Asia Pacific with relatively egalitarian gender norms experiencing significant growth in rheumatology. We examined the Philippines as a case study to analyze the impact of divergent gender norms on gender equity in rheumatology conference participation. We used publicly available data from PRA conference materials from 2009 to 2021. Gender was identified from information provided by organizers, online science directory networks, and a name-to-gender inference platform, the Gender application program interface (API). International speakers were identified separately. The results were then compared to other rheumatology conferences around the world. The PRA had 47% female faculty. Women were more likely to be the first authors in abstracts at the PRA (68%). There were more females among new inductees in PRA with the male: female ratio (M:F) of 1:3. The gender gap among new members declined from 5:1 to 2.7:1 from 2010 to 2015. However, low female representation was observed among international faculty (16%). Gender parity at the PRA was found to be considerably better when compared to other rheumatology conferences in the USA, Mexico, India, and Europe. However, a wide gender gap persisted among international speakers. Cultural and social constructs may potentially contribute to gender equity in academic conferences. Further research is recommended to assess the impact of gender norms on gender parity in academia in other Asia-Pacific countries.

Assessment of quality and reliability of YouTube videos for patient and physician education on inflammatory myositis.

INTRODUCTION: YouTube is the second most popular search website worldwide to access health information online. This study was undertaken to assess the reliability and quality of information about myositis on YouTube and delineate attributes of useful videos using standard metrics. METHODS: We conducted a thorough search on YouTube using 9 search terms related to myositis. The inclusion criteria were content related to myositis, English language and acceptable audio-video quality. Duplicates and advertisements were excluded from the analysis. Videos were classified as useful, not very useful or misleading and patient narratives. Reliability was determined using the mDISCERN criteria, quality using the Global Quality Scale (GQS) and JAMA system, using appropriate cut-offs (mDISCERN > 4, GQS > 4, JAMA > 3). RESULTS: Out of a total of 900 videos, 453 were included for the analysis. Seventy-four per cent and 2% provided useful and not very useful information respectively, while 24% were patient narratives. Seventy-one per cent were intended specifically for patients while 69% were for healthcare providers and students. Noteworthily, useful and not very useful videos had similar total views though the number of likes and daily viewership were higher for useful videos (p = 0.024, p = 0.046). Nearly half (47%) of useful videos were by professional medical societies/patient support groups (PSGs) while not very useful ones were by nonmedical media (38%). Physician-predicted usefulness was discordant with score-based usefulness (κ = 0.129). However, GQS emerged as a significant (p = 0.008) predictor of video usefulness in multivariate analysis. CONCLUSION: A large majority of English YouTube videos on myositis provide useful information for patients. Physicians could signpost patients to high-quality useful videos as determined by GQS and sources like professional medical societies and PSGs. Key Points •This study highlights the importance of regulating health information posted online, accessed by millions of people, to gauge the quality of information and to identify and curb misinformation. •It also identifies recommendations for the future for uploading such content on the Internet. •The implications lie in our patients being better informed about their disease as they are important stakeholders in the healthcare decision-making process.

Gender equity in rheumatology leadership in the Asia-Pacific.

Objectives: This study aimed to explore gender equity in rheumatology leadership in the Asia-Pacific region as represented by the member national organizations (MNOs) of the Asia-Pacific League of Associations for Rheumatology (APLAR). Methods: We conducted a retrospective cross-sectional review of gender representation among the presidents of MNOs of APLAR in April 2022. We used the official website of each organization to acquire names and terms in the office of current and past presidents of each organization. The binary gender of each president was estimated using the name-to-gender inference platform Gender API (https://gender-api.com/). Proportions of male and female presidents were estimated for each organization. Data were compared for presidencies commencing before and in/after the year 2000. Results: We found a significant gap in gender parity, with most presidents in the region being men (210 of 252, 83%). More than one-third (7 of 19, 36.8%) of the MNOs had all male presidents, although the proportion of women improved from 7 to 25% in/after 2000 (P = 0.0002). A statistically significant increase in female representation was observed in Australia (P = 0.0268, from 7 to 39%) and New Zealand (P = 0.0011, where the proportion of female presidents increased from 0 to 45%), but not in other countries. Conclusion: A significant gap in gender parity exists in rheumatology leadership in the MNOs of APLAR. Trends suggest improvement over the last two decades, although statistically significant improvement is limited to a small number of countries.

Mechanic's Hand Heralding Relapse in an Indian Adolescent with Anti-MDA5 Positive Juvenile Dermatomyositis.

Anti-MDA5 antibodies characterise a distinct phenotype of dermatomyositis in adults as well as children, with ethnic disparity in clinical presentation and severity. They often present as a diagnostic conundrum with rash, ulceration, and polyarthritis, but minimal muscle disease. Mechanic's hands are typically associated with anti-synthetase syndrome, but their presence in anti-MDA5 antibody positive patients, although reported, is not well known. We present the case of a boy in whom mechanic's hand heralded a relapse of juvenile dermatomyositis which was suspected based on remotely assessed patient-reported outcome measures on teleconsultation. This report suggests that mechanic's hands should also prompt testing for myositis antibodies including anti-MDA5 in Indian children with JDM. Diligent awareness of the condition, and timely use of patient reported outcome measures of muscle power and skin assessment may guide management while delivering remote care in challenging situations such as a global pandemic.

Improving benefit-harm assessment of glucocorticoid therapy incorporating the patient perspective: The OMERACT glucocorticoid core domain set.

OBJECTIVE: Our primary objective was to develop an Outcome Measures in Rheumatology (OMERACT) core domain set to capture the impact of glucocorticoids (GC), both positive and negative, on patients with Rheumatic conditions. METHODS: The OMERACT Filter 2.1 was used to guide core domain selection. Systematic literature reviews, qualitative studies and quantitative surveys were conducted by the OMERACT GC Impact working group to identify candidate domains for a core domain set. A summary of prior work and Delphi exercise were presented at the OMERACT 2020 virtual GC workshop. A proposed GC Impact core domain set derived from this work was presented for discussion in facilitated breakout groups. Participants voted on the proposed GC Impact core domain set. RESULTS: 113 people, including 23 patient research partners, participated in two virtual workshops conducted at different times on the same day. The proposed mandatory domains to be evaluated in clinical trials involving GCs were: infection, bone fragility, hypertension, diabetes, weight, fatigue, mood disturbance and death. In addition, collection of disease specific outcomes was included in the core domain set as "mandatory in specific circumstances". The proposed core domain set was endorsed by 100% (23/23) of the patient research partners and 92% (83/90) of the remaining participants, including clinicians, researchers and industry stakeholders. CONCLUSION: A GC Impact core domain set was endorsed at the OMERACT 2020 virtual workshop. The OMERACT GC Impact working group will now progress to identify, develop and validate measurement tools to best address these domains in clinical trials.

Sex hormones, autoimmunity and gender disparity in COVID-19.

The Coronavirus disease 2019 (COVID-19) pandemic has majorly contributed to massive and widespread mortality. Epidemiological data strongly indicates a sex-based disparity in COVID-19 clinical outcomes, with women having lower infection and hospitalisation rates, coupled with better prognosis and lesser mortality. This disparity may be explained by several mechanisms including differences in innate and adaptive immune responses, genetic factors, and an interplay between sex hormones and immune effectors, as well as gender-specific behaviour differences. These pathways, particularly the immunological divergence in response to viral infection, could potentially influence not only COVID-19 pathogenesis and disease course, but also the response to antiviral drugs and vaccines. Furthermore, factors that confer a protective advantage against COVID-19 may be exploited to develop therapeutic strategies to improve clinical outcomes in COVID-19.

COVID-19 and myositis - unique challenges for patients.

OBJECTIVE: The COVID-19 pandemic and the subsequent effects on healthcare systems is having a significant effect on the management of long-term autoimmune conditions. The aim of this study was to assess the problems faced by patients with idiopathic inflammatory myopathies (IIM). METHODS: An anonymized eSurvey was carried out with a focus on effects on disease control, continuity of medical care, drug procurance and prevalent fears in the patient population. RESULTS: Of the 608 participants (81.1% female, median (s.d.) age 57 (13.9) years), dermatomyositis was the most frequent subtype (247, 40.6%). Patients reported health-related problems attributable to the COVID-19 pandemic (n = 195, 32.1%); specifically 102 (52.3%) required increase in medicines, and 35 (18%) required hospitalization for disease-related complications. Over half (52.7%) of the surveyed patients were receiving glucocorticoids and/or had underlying cardiovascular risk factors (53.8%), placing them at higher risk for severe COVID-19. Almost one in four patients faced hurdles in procuring medicines. Physiotherapy, critical in the management of IIM, was disrupted in 214 (35.2%). One quarter (159, 26.1%) experienced difficulty in contacting their specialist, and 30 (4.9%) were unable to do so. Most (69.6%) were supportive of the increased use of remote consultations to maintain continuity of medical care during the pandemic. CONCLUSION: This large descriptive study suggests that the COVID-19 pandemic has incurred a detrimental effect on continuity of medical care for many patients with IIM. There is concern that delays and omissions in clinical care may potentially translate to poorer outcomes in the future.

Patient Perspectives on the Effect of the SARS-CoV-2 Pandemic on Patients With Systemic Sclerosis: An International Patient Survey.

BACKGROUND: The coronavirus disease (COVID-19) pandemic and its subsequent effects on health care systems have significantly impacted the management of chronic rheumatic diseases, including systemic sclerosis (SSc). METHODS: In this context, a 25-item anonymized e-survey was posted on the Twitter and Facebook e-groups and pages of various scleroderma organizations and patient communities to assess the problems faced by patients with SSc during the pandemic, with a focus on effects on the disease, drug procurance, continuity of medical care, and prevalent fears among patients. RESULTS: Of the 291 participants (median age of 55 [43.5-63] years, 93.8% females), limited systemic sclerosis was the most common diagnosis (42.3%). Many patients experienced problems attributable to the COVID-19 pandemic (119, 40.9%), of which 46 (38.7%) required an increase in medicines, and 12 (10.1%) of these needed hospitalizations for disease-related complications. More than one-third (36.4%) were on glucocorticoids or had underlying cardiovascular risks (39%) that would predispose them to severe COVID-19.A significant proportion (38.1%) faced hurdles in procuring medicines or experienced disruption in physiotherapy sessions (24.7%). One-quarter (24.1%) felt it was difficult to contact their specialist, whereas another 7.2% were unable to do so. Contracting COVID-19 was the most prevalent fear (71.5%), followed by infection in the family (61.9%), and a flare of the disease (45.4%). Most respondents preferred teleconsultations (55.7%) over hospital visits in the pandemic period. CONCLUSION: The results of the patient survey suggest that the COVID-19 pandemic has affected many patients with SSc and may translate to poorer outcomes in this population in the postpandemic period.

NMR-based serum and muscle metabolomics for diagnosis and activity assessment in idiopathic inflammatory myopathies.

Objectives: Differentiating smoldering disease activity from weakness due to fatty replacement of atrophied muscle can often be a challenge in the idiopathic inflammatory myositis (IIM). We aimed to identify the metabolic disturbances associated with IIM and if these changes can aid in the assessment of disease activity. Methods: Metabolic profiles of sera (N = 99) and muscle (N = 21) from patients with IIM (ACR-EULAR criteria) were compared with healthy control (HC) samples (N = 75 for serum and N = 12 for muscle tissues) employing 800 MHz NMR (Nuclear Magnetic Resonance) spectroscopy. Metabolic disparity between IIM and HC was established based on Partial Least Squares Discriminant Analysis (PLS-DA) and the discriminatory metabolites were identified based on variable importance in projection (VIP) statistics (P-value < .05, corrected for false discovery rate (FDR)). Results: Serum metabolomics profiles were distinctive in IIM as compared to HC, with a visible shift to anaerobic metabolism (increased lactate, low glucose), oxidative defect (high Phenylalanine/tyrosine), decreased muscle mass (low serum creatinine), increased muscle catabolism (increased branched-chain amino acids), and dyslipidemia (higher lipids, higher very low-density lipoprotein [VLDL]/low-density lipoprotein [LDL] ratio, lower polyunsaturated fatty acid [PUFA]). The sera of active IIM patients were characterized by anaerobic metabolism (low glucose), loss of muscle mass (low creatinine, amino acids), and oxidative defect (high Phenylalanine/tyrosine). Three metabolites (isopropanol, succinate, and glycine) were distinctive in muscle tissue metabolomics. NMR-based serum metabolic disparity was lacking between different clinical subsets of IIM. Conclusion: Serum and muscle tissue metabolomics have the potential to distinguish (a) IIM from HC and (b) active IIM from inactive IIM irrespective of disease subtype.

A Systematic Review of Smartphone Applications Available for Corona Virus Disease 2019 (COVID19) and the Assessment of their Quality Using the Mobile Application Rating Scale (MARS).

The global impact of COVID-19 pandemic has led to a rapid development and utilization of mobile health applications. These are addressing the unmet needs of healthcare and public health system including contact tracing, health information dissemination, symptom checking and providing tools for training healthcare providers. Here we provide an overview of mobile applications being currently utilized for COVID-19 and their assessment using the Mobile Application Rating Scale. We performed a systematic review of the literature and mobile platforms to assess mobile applications currently utilized for COVID-19, and a quality assessment of these applications using the Mobile Application Rating Scale (MARS) for overall quality, Engagement, Functionality, Aesthetics, and Information. Finally, we provide an overview of the key salient features that should be included in mobile applications being developed for future use. Our search identified 63 apps that are currently being used for COVID-19. Of these, 25 were selected from the Google play store and Apple App store in India, and 19 each from the UK and US. 18 apps were developed for sharing up to date information on COVID-19, and 8 were used for contact tracing while 9 apps showed features of both. On MARS Scale, overall scores ranged from 2.4 to 4.8 with apps scoring high in areas of functionality and lower in Engagement. Future steps should involve developing and testing of mobile applications using assessment tools like the MARS scale and the study of their impact on health behaviours and outcomes.

A systematic review of the smartphone applications available for coronavirus disease 2019 (COVID19) and their assessment using the mobile app rating scale (MARS).

The global impact of COVID-19 pandemic has increased the need to rapidly develop and improve utilization of mobile applications across the healthcare continuum to address rising barriers of access to care due to social distancing challenges and allow continuity in sharing of health information, assist with COVID-19 activities including contact tracing, and providing useful information as needed. Here we provide an overview of mobile applications being currently utilized for COVID-19 related activities. We performed a systematic review of the literature and mobile platforms to assess mobile applications been currently utilized for COVID-19, and quality assessment of these applications using the Mobile Application Rating Scale (MARS) for overall quality, Engagement, Functionality, Aesthetics, and Information. Finally, we provide an overview of the key salient features that should be included in mobile applications being developed for future use. Our search identified 63 apps that are currently being used for COVID-19. Of these, 25 were selected from the Google play store and Apple App store in India, and 19 each from the UK and US. 18 apps were developed for sharing up to date information on COVID-19, and 8 were used for contact tracing while 9 apps showed features of both. On MARS Scale, overall scores ranged from 2.4 to 4.8 with apps scoring high in areas of functionality and lower in Engagement. Future steps should involve developing and testing of mobile applications using assessment tools like the MARS scale and the study of their impact on health behaviors and outcomes.