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Original research
Early experience of COVID-19 vaccination in adults with systemic rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance Vaccine Survey
  1. Sebastian Eduardo Sattui1,
  2. Jean W Liew2,
  3. Kevin Kennedy3,
  4. Emily Sirotich4,
  5. Michael Putman5,
  6. Tarin T Moni6,
  7. Akpabio Akpabio7,
  8. Deshiré Alpízar-Rodríguez8,
  9. Francis Berenbaum9,
  10. Inita Bulina10,
  11. Richard Conway11,
  12. Aman Dev Singh12,
  13. Eimear Duff13,
  14. Karen L Durrant14,
  15. Tamer A Gheita15,
  16. Catherine L Hill16,17,
  17. Richard A Howard18,
  18. Bimba F Hoyer19,
  19. Evelyn Hsieh20,21,
  20. Lina El Kibbi22,
  21. Adam Kilian23,
  22. Alfred Hyoungju Kim24,
  23. David F L Liew25,26,
  24. Chieh Lo27,
  25. Bruce Miller28,
  26. Serena Mingolla29,
  27. Michal Nudel30,
  28. Candace A Palmerlee31,
  29. Jasvinder A Singh32,33,
  30. Namrata Singh34,
  31. Manuel Francisco Ugarte-Gil35,36,
  32. John Wallace37,
  33. Kristen J Young38,
  34. Suleman Bhana39,
  35. Wendy Costello40,
  36. Rebecca Grainger41,
  37. Pedro M Machado42,43,
  38. Philip C Robinson44,45,
  39. Paul Sufka46,
  40. Zachary S Wallace47,48,
  41. Jinoos Yazdany49,
  42. Carly Harrison50,
  43. Maggie Larché51,
  44. Mitchell Levine52,
  45. Gary Foster53,
  46. Lehana Thabane52,
  47. Lisa G Rider54,
  48. Jonathan S Hausmann48,55,56,
  49. Julia F Simard57,58 and
  50. Jeffrey A Sparks48,59
  1. 1Division of Rheumatology, Hospital for Special Surgery, New York, New York, USA
  2. 2Section of Rheumatology, Boston University School of Medicine, Boston, Massachusetts, USA
  3. 3Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada
  4. 4Medicine, McMaster University, Hamilton, Ontario, Canada
  5. 5Department of Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin, USA
  6. 6Department of Biochemistry & Biomedical Sciences, McMaster University Faculty of Science, Hamilton, Ontario, Canada
  7. 7Rheumatology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  8. 8Research Unit, Mexican College of Rheumatology, Coyoacan, Ciudad de México, Mexico
  9. 9Rheumatology, Sorbonne Université, Paris, France
  10. 10Department of Internal Diseases, Rheumatology Centre, Paul Stradins Clinical University Hospital, Riga, Latvia
  11. 11Rheumatology, Saint James's Hospital, Dublin, Ireland
  12. 12Community Medicine, GMC Patiala, Punjab, India
  13. 13Department of Rheumatology, Saint James's Hospital, Dublin, Ireland
  14. 14Autoinflammatory Alliance, San Francisco, California, USA
  15. 15Rheumatology and Clinical Immunology, Faculty of Medicine, Cairo University, Cairo, Egypt
  16. 16Rheumatology Department, The Queen Elizabeth Hospital, Adelaide, South Australia, Australia
  17. 17Department of Medicine, University of Adelaide, Adelaide, South Australia, Australia
  18. 18Spondylitis Association of America, Van Nuys, California, USA
  19. 19Medical Department I, Department for Rheumatology and Clinical Immunology, University Hospital Schleswig-Holstein Campus Kiel, Kiel, Schleswig-Holstein, Germany
  20. 20Section of Rheumatology, Allergy & Immunology, Yale School of Medicine, New Haven, Connecticut, USA
  21. 21Section of Rheumatology, VA Connecticut Healthcare System—West Haven Campus, West Haven, Connecticut, USA
  22. 22Rheumatology, Specialized Medical Center Hospital, Riyadh, Saudi Arabia
  23. 23Department of Internal Medicine, Division of Rheumatology, Saint Louis University, Saint Louis, Missouri, USA
  24. 24Medicine/Rheumatology, Washington University in Saint Louis School of Medicine, Saint Louis, Missouri, USA
  25. 25Rheumatology, Austin Health, Heidelberg West, Victoria, Australia
  26. 26Clinical Pharmacology and Therapeutics, Austin Health, Heidelberg, Victoria, Australia
  27. 27I-Shou University College of Medicine, Yanchau Sheng, Taiwan
  28. 28Medicine, University of California San Diego, La Jolla, California, USA
  29. 29Italian National Patient Association for Rehumatoid and Rare Disease (APMARR), Rome, Italy
  30. 30The Israeli Association for RMD Patients "Mifrakim Tz'eirim", Haifa, Israel
  31. 31Relapsing Polychondritis Foundation, International Relapsing Polychondritis Research Network, Walnut Creek, California, USA
  32. 32Department of Medicine, University of Alabama at Birmingham, Birmingham, Alabama, USA
  33. 33Medicine Service, Birmingham Veterans Affairs Medical Center, Birmingham, Alabama, USA
  34. 34Medicine, Division of Rheumatology, University of Washington, Seattle, Washington, USA
  35. 35Department of Rheumatology, Universidad Cientifica del Sur, Lima, Peru
  36. 36Universidad Científica del Sur, Lima, Peru
  37. 37Autoinflammatory UK, Edinburgh, UK
  38. 38Division of Rheumatology, University of Texas Southwestern Medical School, Dallas, Texas, USA
  39. 39Crystal Run Healthcare, Middletown, New York, USA
  40. 40Irish Children's Arthritis Network (iCAN), Tipperary, Ireland
  41. 41Department of Medicine, Malaghan Institute of Medical Research, Wellington, New Zealand
  42. 42MRC Centre for Neuromuscular Diseases, University College London, London, UK
  43. 43Rheumatology, University College London Centre for Rheumatology, London, UK
  44. 44Faculty of Medicine, The University of Queensland, Herston, Queensland, Australia
  45. 45Metro North Hospital & Health Service, Royal Brisbane and Woman's Hospital Health Service District, Herston, Queensland, Australia
  46. 46Healthpartners, St Paul, Minnesota, USA
  47. 47Clinical Epidemiology Program and Rheumatology Unit, Division of Rheumatology,Allergy, and Immunology, Massachusetts General Hospital, Boston, Massachusetts, USA
  48. 48Department of Medicine, Harvard Medical School, Boston, Massachusetts, USA
  49. 49Medicine/Rheumatology, University of California, San Francisco, California, USA
  50. 50LupusChat, New York, New York, USA
  51. 51Division of Clinical Immunology and Allergy, McMaster University Department of Medicine, Hamilton, Ontario, Canada
  52. 52Department of Health Research Methods, Evidence and Impact (HEI), McMaster University Faculty of Health Sciences, Hamilton, Ontario, Canada
  53. 53Department of Health Research Methods, Evidence, and Impact (HEI); Medicine, McMaster University, Hamilton, Ontario, Canada
  54. 54Environmental Autoimmunity Group, NIEHS/NIH/DHHS, Bethesda, Maryland, USA
  55. 55Rheumatology, Boston Children's Hospital, Boston, Massachusetts, USA
  56. 56Division of Rheumatology and Clinical Immunology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
  57. 57Epidemiology and Population Health and Department of Medicine, Division of Immunology & Rheumatology, Stanford School of Medicine, Stanford, California, USA
  58. 58Department of Medicine, Clinical Epidemiology Unit, Sweden
  59. 59Department of Medicine, Division of Rheumatology, Inflammation, and Immunity, Brigham and Women's Hospital, Boston, Massachusetts, USA
  1. Correspondence to Dr Jeffrey A Sparks; jsparks{at}bwh.harvard.edu

Abstract

Background We describe the early experiences of adults with systemic rheumatic disease who received the COVID-19 vaccine.

Methods From 2 April to 30 April 2021, we conducted an online, international survey of adults with systemic rheumatic disease who received COVID-19 vaccination. We collected patient-reported data on clinician communication, beliefs and intent about discontinuing disease-modifying antirheumatic drugs (DMARDs) around the time of vaccination, and patient-reported adverse events after vaccination.

Results We analysed 2860 adults with systemic rheumatic diseases who received COVID-19 vaccination (mean age 55.3 years, 86.7% female, 86.3% white). Types of COVID-19 vaccines were Pfizer-BioNTech (53.2%), Oxford/AstraZeneca (22.6%), Moderna (21.3%), Janssen/Johnson & Johnson (1.7%) and others (1.2%). The most common rheumatic disease was rheumatoid arthritis (42.3%), and 81.2% of respondents were on a DMARD. The majority (81.9%) reported communicating with clinicians about vaccination. Most (66.9%) were willing to temporarily discontinue DMARDs to improve vaccine efficacy, although many (44.3%) were concerned about rheumatic disease flares. After vaccination, the most reported patient-reported adverse events were fatigue/somnolence (33.4%), headache (27.7%), muscle/joint pains (22.8%) and fever/chills (19.9%). Rheumatic disease flares that required medication changes occurred in 4.6%.

Conclusion Among adults with systemic rheumatic disease who received COVID-19 vaccination, patient-reported adverse events were typical of those reported in the general population. Most patients were willing to temporarily discontinue DMARDs to improve vaccine efficacy. The relatively low frequency of rheumatic disease flare requiring medications was reassuring.

  • COVID-19
  • vaccination
  • autoimmune diseases

Data availability statement

Data are available on reasonable request. Researchers interested in performing additional analyses from survey data are invited to submit proposals through the COVID-19 Global Rheumatology Alliance at rheum-covid.org. For approved projects, we will be able to provide summary tables and data analyses as requested. We do not currently have IRB approval to make the raw data available to other researchers.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Data availability statement

Data are available on reasonable request. Researchers interested in performing additional analyses from survey data are invited to submit proposals through the COVID-19 Global Rheumatology Alliance at rheum-covid.org. For approved projects, we will be able to provide summary tables and data analyses as requested. We do not currently have IRB approval to make the raw data available to other researchers.

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Footnotes

  • JSH, JFS and JAS are joint senior authors.

  • SES and JWL are joint first authors.

  • Twitter @SattuiSEMD, @mugartegil, @pedrommcmachado, @philipcrobinson

  • JSH, JFS and JAS contributed equally.

  • SES and JWL contributed equally.

  • Contributors SES, JL, KK, ES and MP contributed to data collection, data quality control, data analysis and interpretation. They drafted and revised the manuscript critically for important intellectual content and gave final approval of the version published. AA, DA-R, FB, IB, RC, ADS, ED, KD, TAG, CLH, RAH, BFH, EH, LEK, AK, AHK, DFLL, CL BM, SM, MN, JASi, NS, MFU-G, JW and KJY critically revised the manuscript and provided intellectual content. TTM, CH, MLarche, MLevine, GF, LT and LGR contributed to planning and data collection, reviewed the manuscript and provided important intellectual content. SB, WC, RG, PMM, PCR, PS, ZW and JY contributed to the acquisition, analysis and interpretation of the data. They drafted and revised the manuscript critically for important intellectual content and gave final approval of the version published. JAS, JS and JH directed the work, designed the data collection methods and contributed to the analysis and interpretation of the data. They drafted and revised the manuscript critically for important intellectual content and gave final approval of the version to be published. SES, JWL, KK, JSimard and JSparks had full access to the data and verify the credibility of the underlying data. All authors have read, revised and approved this manuscript and final responsibility for the decision to submit for publication.

  • Funding This study was supported by the European Alliance of Associations for Rheumatology and American College of Rheumatology Research and Education Foundation. Dr. Lisa Rider's involvement was supported in part by the Intramural Research Program of the National Institutes of Health, National Institute of Environmental Health Sciences.

  • Disclaimer 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 American College of Rheumatology (ACR), EULAR, the (UK) National Health Service (NHS), the National Institute for Health Research (NIHR) or the (UK) Department of Health, or any other organisation. The funders had no role in the decision to publish or preparation of this manuscript. The content is solely the responsibility of the authors and does not necessarily represent the official views of Harvard University, its affiliated academic health care centers, or the National Institutes of Health.

  • Competing interests SES has received funding from the Vasculitis Foundation and the Vasculitis Clinical Research Consortium unrelated to this work. JL has received research grant funding from Pfizer unrelated to this 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. MP was supported by a Rheumatology Research Foundation Scientist Development grant. DA-R is a Scientific Advisor for GlaxoSmithKilne unrelated to this work. FB reports personal fees from Boehringer, Bone Therapeutics, Expanscience, Galapagos, Gilead, GSK, Merck Sereno, MSD, Nordic, Novartis, Pfizer, Regulaxis, Roche, Sandoz, Sanofi, Servier, UCB, Peptinov, TRB Chemedica and 4P Pharma outside of the submitted work. No funding relevant to this manuscript. RC: speakers bureau for Janssen, Roche, Sanofi, AbbVie. KD reports no COI-unpaid volunteer president of the Autoinflammatory Alliance. Any grants or funding from pharma is received by the non-profit organisation only. CLH received funding under a sponsored research agreement unrelated to the data in the paper from Vifor Pharmaceuticals. LeK has received a research grant from Lilly unrelated to this work. AHJK participated in consulting, advisory board or speaker's bureau for Alexion Pharmaceuticals, Aurinia Pharmaceuticals, Annexon Biosciences, Exagen Diagnostics and GlaxoSmithKilne and received funding under a sponsored research agreement unrelated to the data in the paper from GlaxoSmithKline. JSingh 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, UBM, Trio Health, Medscape, WebMD and Practice Point Communications; and the National Institutes of Health and the American College of Rheumatology. JSingh owns stock options in TPT Global Tech, Vaxart Pharmaceuticals and Charlotte’s Web Holdings. JSingh previously owned stock options in Amarin, Viking and Moderna Pharmaceuticals. JSingh is on the speaker’s bureau of Simply Speaking. JSingh is a member of the executive of Outcomes Measures in Rheumatology (OMERACT), an organisation that develops outcome measures in rheumatology and receives arms-length funding from eight companies. JSingh serves on the FDA Arthritis Advisory Committee. JSingh is the chair of the Veterans Affairs Rheumatology Field Advisory Committee. JSingh is the editor and the Director of the University of Alabama at Birmingham (UAB) Cochrane Musculoskeletal Group Satellite Center on Network Meta-analysis. NSingh is supported by funding from the Rheumatology Research Foundation Investigator Award and the American Heart Association. MFU-G has received research support from Pfizer and Janssen, unrelated to this work. SB reports personal fees from Novartis, AbbVie, Pfizer and Horizon Pharma, outside the submitted work. RG reports personal fees from AbbVie New Zealand, Cornerstones, Janssen New Zealand and personal fees and non-financial support Pfizer New Zealand (all <US$10 000) outside the submitted work. PMM reports personal fees from AbbVie, Eli Lilly, Janssen, Novartis, Pfizer and UCB, 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, UCB Pharma, Janssen and Pfizer and non-financial support from BMS, outside the submitted work. PS reports honoraria from Social media editor for @ACR_Journals, outside the submitted work. ZSW reports grants from NIH, BMS 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. MJL reports grants from American College of Rheumatology, during the conduct of the study and consulting fees from AbbVie, Amgen, Actelion, Boehringer Ingelheim, BMS, Celgene, Gilead, J&J, Mallinckrodt, Novartis, Pfizer, Roche, Sandoz, Sanofi, Sobi and UCB, outside the submitted work. LGR was supported by the Intramural Research Program of the National Institute of Environmental Health Sciences (NIEHS; ZIAES101074) of the National Institutes of Health. JH reports grants from Childhood Arthritis and Rheumatology Research Alliance (CARRA) and Rheumatology Research Alliance, and personal fees from Novartis, Pfizer and Biogen, outside the submitted work. JSimard received research grant funding from the National Institutes of Health unrelated to this work (NIAMS: R01 AR077103 and NIAID R01 AI154533). JSparks has performed consultancy for AbbVie, Boehringer Ingelheim, Bristol-Myers Squibb, Gilead, Inova Diagnostics, Optum and Pfizer unrelated to this work.

  • Provenance and peer review Not commissioned; externally peer reviewed.