Experience with telemedicine among rheumatology clinicians during the COVID-19 pandemic: an international survey

Objective: The aim was to assess rheumatology clinicians' perceptions of telemedicine and their experiences before and during the coronavirus disease 2019 (COVID-19) pandemic. Methods: We conducted a cross-sectional online survey and collected responses from rheumatology clinicians worldwide, between November 2020 and February 2021, regarding use and perceptions of telemedicine in rheumatology. We summarized data with descriptive statistics and qualitative analysis for free-text responses. Results: The survey was completed by 349 rheumatology clinicians from 49 countries; 59% were female and about two-thirds were in the 30-50 years age group. Academic affiliations were held by 55% of participants, and 44% were from North America. Before the pandemic, 24% of participants had experience with telemedicine, whereas about three-quarters used telemedicine for the first time during the pandemic. Overall, 56% thought they provided less adequate care with telemedicine. More than half of clinicians felt that telemedicine was adequate for evaluating crystalline arthritis, inflammatory arthritis and lupus flares. Telemedicine was felt to be inadequate for flares of myositis, vasculitis and scleroderma. Technical problems were reported in 29% of telemedicine encounters and were most commonly related to patient-encountered difficulties. Conclusion: Most rheumatology clinicians used telemedicine for the first time during the pandemic. The quality of care provided was thought to be inferior to that provided in person for specific clinical situations. Additional efforts are needed to address barriers to effective telemedicine, such as patient-related technology issues, challenges with building rapport and performing a physical examination, and to define the appropriate scope of clinical scenarios conducive to telemedicine

“We come together as one…and hope for solidarity to live on”: On designing technologies for activism and the commemoration of lost lives

On the International Day to End Violence Against Sex Workers (IDEVASW), sex worker rights advocates and support services commemorate lives lost due to violence. In this paper we describe and reflect on a Feminist Participatory Action Research project that supported the activities of IDEVASW over two years in North East England. Working alongside a charity that provides services to women who are sex workers or have experienced sexual exploitation, we co-organised the first activist march on the day. As researchers and service providers, we present detailed reflections on the use of digital technologies during the public activist march, a private service for commemoration, and the development of a semi-public archive to collect experiences of the day. We develop three implications for the design of digital technologies for activism and the commemoration of lost lives: as catalysts for reflection and opportunities to layer experience

Prolonged COVID-19 symptom duration in people with systemic autoimmune rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance Vaccine Survey

OBJECTIVE: We investigated prolonged COVID-19 symptom duration, defined as lasting 28 days or longer, among people with systemic autoimmune rheumatic diseases (SARDs). METHODS: We analysed data from the COVID-19 Global Rheumatology Alliance Vaccine Survey (2 April 2021-15 October 2021) to identify people with SARDs reporting test-confirmed COVID-19. Participants reported COVID-19 severity and symptom duration, sociodemographics and clinical characteristics. We reported the proportion experiencing prolonged symptom duration and investigated associations with baseline characteristics using logistic regression. RESULTS: We identified 441 respondents with SARDs and COVID-19 (mean age 48.2 years, 83.7% female, 39.5% rheumatoid arthritis). The median COVID-19 symptom duration was 15 days (IQR 7, 25). Overall, 107 (24.2%) respondents had prolonged symptom duration (≥28 days); 42/429 (9.8%) reported symptoms lasting ≥90 days. Factors associated with higher odds of prolonged symptom duration included: hospitalisation for COVID-19 vs not hospitalised and mild acute symptoms (age-adjusted OR (aOR) 6.49, 95% CI 3.03 to 14.1), comorbidity count (aOR 1.11 per comorbidity, 95% CI 1.02 to 1.21) and osteoarthritis (aOR 2.11, 95% CI 1.01 to 4.27). COVID-19 onset in 2021 vs June 2020 or earlier was associated with lower odds of prolonged symptom duration (aOR 0.42, 95% CI 0.21 to 0.81). CONCLUSION: Most people with SARDs had complete symptom resolution by day 15 after COVID-19 onset. However, about 1 in 4 experienced COVID-19 symptom duration 28 days or longer; 1 in 10 experienced symptoms 90 days or longer. Future studies are needed to investigate the possible relationships between immunomodulating medications, SARD type/flare, vaccine doses and novel viral variants with prolonged COVID-19 symptoms and other postacute sequelae of COVID-19 among people with SARDs

results from the COVID-19 Global Rheumatology Alliance Vaccine Survey

Funding Information: MP, KK, and ES contributed equally and are co-first authors. JHS, JASp, and JFS contributed equally and are co-senior authors. The authors thank Berk Degirmenci, Christele Feliix, Shangyi Jin, Candace A Palmerlee, Andrea Peirce, Lisa G Rider, Esra Sari, Robert Tseng, and Leslie Wang for their invaluable contributions to the GRA Vax Survey. MP, KK, ES, SES, and JWL contributed to data collection, data quality control, and data analysis and interpretation. AAA, DA-R, SA, RPB, FB, IB, YPEC, RC, AD-G, ED, KLD, TAG, CLH, RH, BFH, EH, LK, AK, AHJK, DFLL, CL, EFM, BM, SM, MN, ADS, JASi, NS, MFU-G, JW, KJY, and EAZ-T, critically revised the manuscript and provided intellectual content. TTM, CH, MJL, ML, GF, and LT contributed to planning and data collection, reviewed the manuscript, and provided important intellectual content. SB, WC, RG, PMM, PCR, PS, ZSW, and JY contributed to the acquisition, analysis, and interpretation of the data. JASp, JFS, and JSH directed the work, designed the data collection methods, and contributed to the analysis and interpretation of the data. MP, KK, ES, SES, JWL, SB, WC, RG, PMM, PCR, PS, ZSW, JY, JASp, JFS, and JSH drafted and revised the manuscript critically for important intellectual content and gave final approval of the version to be published. SES, JWL, KK, JFS, and JASp had full access to the data and verify the credibility of the underlying data. All authors have read, revised, and approved this manuscript and take final responsibility for the decision to submit for publication. MP reports clinical trials participation with AbbVie and grants from Rheumatology Research Foundation, outside the submitted work. ES is a board member of the Canadian Arthritis Patient Alliance, a patient run, volunteer-based organisation whose activities are primarily supported by independent grants from pharmaceutical companies. JWL has received research grant funding from Pfizer unrelated to this work. SES reports research funding related to clinical trials from AstraZeneca (MANDARA), outside of the submitted work and is supported by the Vasculitis Clinical Research Consortium and Vasculitis Foundation outside of the submitted work. DA-R is a scientific advisor for GlaxoSmithKilne unrelated to this work. RC reports speaker fees from Janssen, Roche, Sanofi, and AbbVie, outside of the submitted work. AD-G reports grants from the Center for Disease Control and Prevention, Rheumatology Research Foundation, and Mayo Clinic, outside the submitted work. KLD is an unpaid volunteer president of the Autoinflammatory Alliance and reports grants from Novartis, Sobi, National Institutes of Health (NIH), and Horizon Bio, all received by the non-profit organisation outside of the submitted work. CLH received funding under a sponsored research agreement unrelated to the data in the paper from Vifor Pharmaceuticals. RH reports grants from AbbVie, Amgen, Boehringer Ingleheim, Johnson and Johnson, Lilly, Novartis, Pfizer, and Union Chimique Belge, all paid to Spondylitis Association of America, consultant fees from GlaxoSmithKline and Novartis, outside the submitted work. RH also owns stocks (<20 shares and representing <4% of personal investments) in AbbVie, Amgen, Bristol Myers Squibb, GlaxoSmithKline, Johnson & Johnson, Eli Lilly, Merck, Novartis, Pfizer, Teva, and Union Chimique Belge. AHJK reports personal fees from Exagen Diagnostics, Alexion Pharmaceuticals, and Aurinia Pharmaceuticals, grants from National Institutes of Health, Rheumatology Research Foundation, and Helmsley Charitable Trust, grants and personal fees from GlaxoSmithKline, outside the submitted work. EFM reports personal fees from Boehringer Ingelheim, and that Liga Portuguesa Contra as Doenças Reumaticas has received grants from AbbVie, Novartis, Lilly Portugal, Amgen Biofarmacêutica, Grünenthal, Merck Sharp & Dohme, Medac and from A Menarini Portugal–Farmacêutica; grants and non-financial support from Pfizer and Grünenthal, outside the submitted work. JASi has received consultant fees from Crealta/Horizon, Medisys, Fidia, PK Med, Two labs, Adept Field Solutions, Clinical Care options, Clearview healthcare partners, Putnam associates, Focus forward, Navigant consulting, Spherix, MedIQ, Jupiter Life Science, United BioMed, Trio Health, Medscape, WebMD, and Practice Point communications; and the National Institutes of Health, and the American College of Rheumatology. JASi owns stock options in TPT Global Tech, Vaxart pharmaceuticals, and Charlotte's Web Holdings and previously owned stock options in Amarin, Viking and Moderna pharmaceuticals. JASi is on the speaker's bureau of Simply Speaking and is a member of the executive of Outcomes Measures in Rheumatology, an organisation that develops outcome measures in rheumatology and receives funding from eight companies . JASi also serves on the FDA Arthritis Advisory Committee and is the chair of the Veterans Affairs Rheumatology Field Advisory Committee. JASi is also the editor and the Director of the University of Alabama at Birmingham Cochrane Musculoskeletal Group Satellite Center on Network Meta-analysis. MFU-G has received research support from Pfizer and Janssen, unrelated to this work. SB reports non-branded consulting fees from Novartis, AbbVie, Pfizer, and Horizon Pharma, outside the submitted work, and is a Pfizer employee as of September, 2021. RG reports personal fees from AbbVie New Zealand, Cornerstones, Janssen New Zealand, and Novartis, and personal fees and non-financial support Pfizer Australia (all <AU$10,000) outside the submitted work. PMM reports personal fees from AbbVie, Eli Lilly, Janssen, Novartis, Pfizer, and Union Chimique Belge; and grants and personal fees from Orphazyme, outside the submitted work. PCR reports personal fees from AbbVie, Gilead, Lilly, and Roche; grants and personal fees from Novartis, Union Chimique Belge, Janssen, and Pfizer; and non-financial support from Bristol Myers Squibb, outside the submitted work. PS reports honoraria from bring the social media editor for the American College of Rheumatology journals, outside the submitted work. ZSW reports grants from NIH, Bristol Myers Squibb, and Principia/Sanofi; and personal fees from Viela Bio and MedPace, outside the submitted work. JY reports personal fees from Pfizer and Eli Lilly, and grants and personal fees from AstraZeneca, outside the submitted work. CH reports personal fees from AstraZeneca and Aurinia Pharmaceuticals, outside the submitted work. MJL reports grants from American College of Rheumatology, during the conduct of the study and consulting fees from AbbVie, Amgen, Actelion, Boehringer Ingelheim, Bristol Myers Squibb, Celgene, Gilead, Johnson and Johnson, Mallinckrodt, Novartis, Pfizer, Roche, Sandoz, Sanofi, Sobi, and Union Chimique Belge, outside the submitted work. JSH reports grants from Childhood Arthritis and Rheumatology Research Alliance and Rheumatology Research Alliance, and personal fees from Novartis, Pfizer, and Biogen, outside the submitted work. JASp reports grants from National Institute of Arthritis and Musculoskeletal and Skin Diseases, Rheumatology Research Foundation, and R Bruce and Joan M Mickey Research Scholar Fund; and consulting fees for AbbVie, Boehringer Ingelheim, Bristol Myers Squibb, Gilead, Inova Diagnostics, Optum, and Pfizer, unrelated to this work. JFS received research grant funding from the National Institutes of Health unrelated to this work (NIAMS R01 AR077103, and NIAID R01 AI154533). All other authors report no competing interests. This study was funded by the American College of Rheumatology (ACR). The ACR was not involved in any aspect of study design, collection, analysis, or interpretation of data, writing of the report, or the decision to submit the paper for publication. The views expressed here are those of the authors and participating members of the COVID-19 Global Rheumatology Alliance and do not necessarily represent the views of the ACR, the European Alliance of Associations for Rheumatology, the UK National Health Service, the National Institute for Health Research, or the UK Department of Health, or any other organisation. Researchers interested in performing additional analyses from survey data are invited to submit proposals through the COVID-19 Global Rheumatology Alliance at rheumcovid.org . For approved projects, we will provide summary tables and data analyses as requested. We do not currently have institutional review board approval to make the raw data available to other researchers.publishersversionpublishe

Efforts to Better Characterize "Antiphospholipid Antibody Nephropathy" for the 2023 ACR/EULAR Antiphospholipid Syndrome Classification Criteria: Renal Pathology Subcommittee Report

Objective Antiphospholipid antibody (aPL) nephropathy (-N) can be challenging to recognize due to a lack of established classification or diagnostic criteria. As part of efforts to develop new antiphospholipid syndrome (APS) classification criteria (CC), the APS CC Renal Pathology Subcommittee aimed to better characterize the entity of aPL-N. Methods We used a 4-pronged approach that included (1) administering Delphi surveys to worldwide APS physicians to generate aPL-N terminology; (2) conducting a literature review to demonstrate the association of nephropathy with aPL and identify published aPL-N histopathological terminology and descriptions; (3) evaluating aPL-N terminology used in renal biopsy reports from an international patient registry; and (4) evaluating proposed kidney pathologic features for aPL-N by assessment of international Renal Pathology Society (RPS) members. Results After completing our metaanalysis demonstrating an association between nephropathy and aPL, we used Delphi surveys, a literature review, and international renal biopsy reports to develop a preliminary definition of aPL-N. The preliminary definition included include specific terms associated with acute (ie, thrombotic microangiopathy in glomeruli or arterioles/arteries) and chronic (ie, organized arterial or arteriolar microthrombi with or without recanalization, organized glomerular thrombi, fibrous and fibrocellular [arterial or arteriolar] occlusions, focal cortical atrophy with or without thyroidization, and fibrous intimal hyperplasia) lesions. Most RPS survey respondents agreed with this terminology and the importance of knowing aPL results for histopathological diagnosis. Conclusion Our results support the inclusion of aPL-N in the 2023 American College of Rheumatology/European Alliance of Associations for Rheumatology APS CC, and provide the most widely accepted terminology to date for both acute and chronic pathologic lesions of aPL-N.SCOPUS: ar.jinfo:eu-repo/semantics/publishe

Umbilical Cord Milking vs Delayed Cord Clamping and Associations with In-Hospital Outcomes among Extremely Premature&nbsp;Infants

ObjectiveTo compare in-hospital outcomes after umbilical cord milking vs delayed cord clamping among infants &lt;29&nbsp;weeks of gestation.Study designMulticenter retrospective study of infants born &lt;29&nbsp;weeks of gestation from 2016 to 2018 without congenital anomalies who received active treatment at delivery and were exposed to umbilical cord milking or delayed cord clamping. The primary outcome was mortality or severe (grade III or IV) intraventricular hemorrhage (IVH) by 36&nbsp;weeks of postmenstrual age (PMA). Secondary outcomes assessed at 36&nbsp;weeks of PMA were mortality, severe IVH, any IVH or mortality, and a composite of mortality or major morbidity. Outcomes were assessed using multivariable regression, incorporating mortality risk factors identified a priori, confounders, and center. A prespecified, exploratory analysis evaluated severe IVH in 2 gestational age strata, 22-246/7 and 25-286/7&nbsp;weeks.ResultsAmong 1834 infants, 23.6% were exposed to umbilical cord milking and 76.4% to delayed cord clamping. The primary outcome, mortality or severe IVH, occurred in 21.1% of infants: 28.3% exposed to umbilical cord milking and 19.1% exposed to delayed cord clamping, with an aOR that was similar between groups (aOR 1.45, 95% CI 0.93, 2.26). Infants exposed to umbilical cord milking had higher odds of severe IVH (19.8% umbilical cord milking vs 11.8% delayed cord clamping, aOR 1.70 95% CI 1.20, 2.43), as did the 25-286/7&nbsp;week stratum (14.8% umbilical cord milking vs 7.4% delayed cord clamping, aOR 1.89 95% CI 1.22, 2.95). Other secondary outcomes were similar between groups.ConclusionsThis analysis of extremely preterm infants suggests that delayed cord clamping is the preferred practice for placental transfusion, as umbilical cord milking exposure was associated with an increase in the adverse outcome of severe IVH.Trial registrationClinicalTrials.gov: NCT00063063