Immediate effect of the COVID-19 pandemic on patient health, health-care use, and behaviours: results from an international survey of people with rheumatic diseases

Jonathan S Hausmann^{1

2

3}, Kevin Kennedy⁴, Julia F Simard⁵, Jean W Liew⁶, Jeffrey A Sparks⁷, Tarin T Moni⁸, Carly Harrison⁹, Maggie J Larché¹⁰, Mitchell Levine^{4

11

12}, Sebastian E Sattui¹³, Teresa Semalulu¹¹, Gary Foster^{4

11}, Salman Surangiwala¹⁴, Lehana Thabane⁴, Richard P Beesley^{15

16}, Karen L Durrant¹⁷, Elsa F Mateus¹⁸, Serena Mingolla¹⁹, Michal Nudel²⁰, Candace A Palmerlee²¹, Dawn P Richards²², David F L Liew²³, Catherine L Hill^{24

25}, Suleman Bhana²⁶, Wendy Costello²⁷, Rebecca Grainger²⁸, Pedro M Machado^{29

30

31}, Philip C Robinson³², Paul Sufka³³, Zachary S Wallace³⁴, Jinoos Yazdany³⁵, Emily Sirotich^{4

22}; COVID-19 Global Rheumatology Alliance

Collaborators, Affiliations

Collaborators

COVID-19 Global Rheumatology Alliance:
Philip C Robinson, Suleman Bhana, Jean W Liew, Paul H Sufka, Namrata Singh, Richard A Howard, Alfred Hj Kim, Tiffany Westrich-Robertson, Emily Sirotich, Edmund Tsui, Ali Duarte-Garcia, Jeffrey A Sparks, Herman Tam, Arundathi Jayatilleke, Maximilian F Konig, Elizabeth R Graef, Michael S Putman, Reema H Syed, Peter Korsten, Elsa Mateus, Sebastian E Sattui, Zachary S Wallace, Upton A Laura, Kilian Adam, Yu Pei Eugenia Chock, Douglas W White, Geraldine T Zamora, Lisa S Traboco, Aarat M Patel, Rebecca Grainger, Manuel F Ugarte-Gil, Milena A Gianfrancesco, Isabelle Amigues, Catalina Sanchez-Alvarez, Laura Trupin, Lindsay R Jacobsohn, Richard P Beesley, Bimba F Hoyer, Pedro M Machado, Kavita Makan, Laure Gossec, Chaudhary Priyank, Jan Leipe, Beth Wallace, Sheila T Angeles-Han, Ibrahim A Almaghlouth, Wysham D Katherine, Anthony S Padula, Francis Berenbaum, Erin M Treemarcki, Rashmi Sinha, Laura B Lewandowski, Kate Webb, Kristen J Young, Inita Bulina, Sebastian Herrera Uribe, Tamar B Rubinstein, Marc W Nolan, Elizabeth Y Ang, Swamy R Venuturupalli, Jonathan S Hausmann, Maureen Dubreuil, Cecilia N Pisoni, Micaela A Cosatti, Jose Campos, Julia F Simard, Richard Conway, Tiffany M Peterson, Carly O Harrison, Christele Felix, Dawn P Richards, Laurie Proulx, Akpabio A Akpabio, Angus B Worthing, Lynn R Laidlaw, Pankti Reid, Candace A Palmerlee, Maria I Danila, Lotfi-Emran Sahar, Ngo Q Linh, Arnav Agarwal, Paul Studenic, David Fl Liew, Maggie J Larche, Serena Am Mingolla, Erick A Zamora, Saskya S Angevare, Rashmi R Sinha, Karen Lw Durrant, Andrea Peirce, Emily C Somers, Laura C Cappelli, Brittany A Frankel, Bharat Kumar, Sonia D Silinsky Krupnikova, Jorge A Rosario Vega, Jourdan Frankovich, Ruth Fernandez-Ruiz, Marcela Posada Velásquez, Su-Ann Yeoh, Maria Marino, Michal Nudel, Chrisiaan Scott, Cecilia Rodríguez, Ana I Martín Mancheño, Philip Seo, Rocío V Gamboa-Cárdenas, Victor R Pimentel-Quiroz, Cristina Reátegui-Sokolova, Mari Kihara, Chung Ma Lin, Dheera Kattula, Girgis Laila, Loreto Carmona, John Wallace, Jinoos Yazdany, Wendy Costello, Monique C Gore-Massy, Laura-Ann Tomasella, Moré A Kodek

Affiliations

¹ Division of Rheumatology and Clinical Immunology, Beth Israel Deaconess Medical Center, Boston, MA, USA.
² Division of Immunology, Boston Children's Hospital, Boston, MA, USA.
³ Harvard Medical School, Boston, MA, USA.
⁴ Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, Canada.
⁵ Department of Epidemiology and Population Health, and Division of Immunology and Rheumatology, Department of Medicine, Stanford School of Medicine, Stanford, CA, USA.
⁶ Department of Medicine, Boston University School of Medicine, Boston, MA, USA.
⁷ Division of Rheumatology, Inflammation, and Immunity, Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.
⁸ Department of Biochemistry and Biomedical Sciences, McMaster University, Hamilton, ON, Canada.
⁹ LupusChat, New York, NY, USA.
¹⁰ Divisions of Rheumatology/Clinical Immunology and Allergy, McMaster University, Hamilton, ON, Canada.
¹¹ Department of Medicine, McMaster University, Hamilton, ON, Canada.
¹² Department of Clinical Pharmacology and Toxicology, McMaster University, Hamilton, ON, Canada.
¹³ Division of Rheumatology, Department of Medicine, Hospital for Special Surgery, New York, NY, USA.
¹⁴ School of Medicine, Queen's University, Kingston, ON, Canada.
¹⁵ Juvenile Arthritis Research, Tonbridge, UK.
¹⁶ European Network for Childhood Arthritis, Tonbridge, UK.
¹⁷ Autoinflammatory Alliance, San Francisco, CA, USA.
¹⁸ Portuguese League Against Rheumatic Diseases, Comprehensive Health Research Centre, Lisbon, Portugal.
¹⁹ Italian National Association of People with Rheumatic and Rare Diseases, Brindisi, Italy.
²⁰ The Israeli association for RMDs patients "Mifrakim Tz'eirim", Haifa, Israel.
²¹ Relapsing Polychondritis Foundation, International Relapsing Polychondritis Research Network, Walnut Creek, CA, USA.
²² Canadian Arthritis Patient Alliance, Toronto, ON, Canada.
²³ Department of Rheumatology, Austin Health, Heidelberg, Australia.
²⁴ Rheumatology Unit, The Queen Elizabeth Hospital, Woodville South, Australia.
²⁵ Discipline of Medicine, University of Adelaide, Adelaide, Australia.
²⁶ Crystal Run Healthcare, Middletown, NY, USA.
²⁷ Irish Children's Arthritis Network, Tipperary, Ireland.
²⁸ Department of Medicine, University of Otago, Wellington, New Zealand.
²⁹ Centre for Rheumatology and Department of Neuromuscular Diseases, University College London, London, UK.
³⁰ National Institute for Health Research University College London Hospitals Biomedical Research Centre, University College London Hospitals National Health Service Foundation Trust, London, UK.
³¹ Department of Rheumatology, Northwick Park Hospital, London North West University Healthcare NHS Trust, London, UK.
³² Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia.
³³ HealthPartners, St Paul, MN, USA.
³⁴ Division of Rheumatology, Allergy, and Immunology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
³⁵ Division of Rheumatology, Department of Medicine, University of California San Francisco, San Francisco, CA, USA.

PMID: 34316727
PMCID: PMC8298011
DOI: 10.1016/S2665-9913(21)00175-2

Immediate effect of the COVID-19 pandemic on patient health, health-care use, and behaviours: results from an international survey of people with rheumatic diseases

Jonathan S Hausmann et al. Lancet Rheumatol. 2021 Oct.

. 2021 Oct;3(10):e707-e714.

doi: 10.1016/S2665-9913(21)00175-2. Epub 2021 Jul 22.

Authors

Collaborators

COVID-19 Global Rheumatology Alliance:
Philip C Robinson, Suleman Bhana, Jean W Liew, Paul H Sufka, Namrata Singh, Richard A Howard, Alfred Hj Kim, Tiffany Westrich-Robertson, Emily Sirotich, Edmund Tsui, Ali Duarte-Garcia, Jeffrey A Sparks, Herman Tam, Arundathi Jayatilleke, Maximilian F Konig, Elizabeth R Graef, Michael S Putman, Reema H Syed, Peter Korsten, Elsa Mateus, Sebastian E Sattui, Zachary S Wallace, Upton A Laura, Kilian Adam, Yu Pei Eugenia Chock, Douglas W White, Geraldine T Zamora, Lisa S Traboco, Aarat M Patel, Rebecca Grainger, Manuel F Ugarte-Gil, Milena A Gianfrancesco, Isabelle Amigues, Catalina Sanchez-Alvarez, Laura Trupin, Lindsay R Jacobsohn, Richard P Beesley, Bimba F Hoyer, Pedro M Machado, Kavita Makan, Laure Gossec, Chaudhary Priyank, Jan Leipe, Beth Wallace, Sheila T Angeles-Han, Ibrahim A Almaghlouth, Wysham D Katherine, Anthony S Padula, Francis Berenbaum, Erin M Treemarcki, Rashmi Sinha, Laura B Lewandowski, Kate Webb, Kristen J Young, Inita Bulina, Sebastian Herrera Uribe, Tamar B Rubinstein, Marc W Nolan, Elizabeth Y Ang, Swamy R Venuturupalli, Jonathan S Hausmann, Maureen Dubreuil, Cecilia N Pisoni, Micaela A Cosatti, Jose Campos, Julia F Simard, Richard Conway, Tiffany M Peterson, Carly O Harrison, Christele Felix, Dawn P Richards, Laurie Proulx, Akpabio A Akpabio, Angus B Worthing, Lynn R Laidlaw, Pankti Reid, Candace A Palmerlee, Maria I Danila, Lotfi-Emran Sahar, Ngo Q Linh, Arnav Agarwal, Paul Studenic, David Fl Liew, Maggie J Larche, Serena Am Mingolla, Erick A Zamora, Saskya S Angevare, Rashmi R Sinha, Karen Lw Durrant, Andrea Peirce, Emily C Somers, Laura C Cappelli, Brittany A Frankel, Bharat Kumar, Sonia D Silinsky Krupnikova, Jorge A Rosario Vega, Jourdan Frankovich, Ruth Fernandez-Ruiz, Marcela Posada Velásquez, Su-Ann Yeoh, Maria Marino, Michal Nudel, Chrisiaan Scott, Cecilia Rodríguez, Ana I Martín Mancheño, Philip Seo, Rocío V Gamboa-Cárdenas, Victor R Pimentel-Quiroz, Cristina Reátegui-Sokolova, Mari Kihara, Chung Ma Lin, Dheera Kattula, Girgis Laila, Loreto Carmona, John Wallace, Jinoos Yazdany, Wendy Costello, Monique C Gore-Massy, Laura-Ann Tomasella, Moré A Kodek

Affiliations

¹ Division of Rheumatology and Clinical Immunology, Beth Israel Deaconess Medical Center, Boston, MA, USA.
² Division of Immunology, Boston Children's Hospital, Boston, MA, USA.
³ Harvard Medical School, Boston, MA, USA.
⁴ Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, Canada.
⁵ Department of Epidemiology and Population Health, and Division of Immunology and Rheumatology, Department of Medicine, Stanford School of Medicine, Stanford, CA, USA.
⁶ Department of Medicine, Boston University School of Medicine, Boston, MA, USA.
⁷ Division of Rheumatology, Inflammation, and Immunity, Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA.
⁸ Department of Biochemistry and Biomedical Sciences, McMaster University, Hamilton, ON, Canada.
⁹ LupusChat, New York, NY, USA.
¹⁰ Divisions of Rheumatology/Clinical Immunology and Allergy, McMaster University, Hamilton, ON, Canada.
¹¹ Department of Medicine, McMaster University, Hamilton, ON, Canada.
¹² Department of Clinical Pharmacology and Toxicology, McMaster University, Hamilton, ON, Canada.
¹³ Division of Rheumatology, Department of Medicine, Hospital for Special Surgery, New York, NY, USA.
¹⁴ School of Medicine, Queen's University, Kingston, ON, Canada.
¹⁵ Juvenile Arthritis Research, Tonbridge, UK.
¹⁶ European Network for Childhood Arthritis, Tonbridge, UK.
¹⁷ Autoinflammatory Alliance, San Francisco, CA, USA.
¹⁸ Portuguese League Against Rheumatic Diseases, Comprehensive Health Research Centre, Lisbon, Portugal.
¹⁹ Italian National Association of People with Rheumatic and Rare Diseases, Brindisi, Italy.
²⁰ The Israeli association for RMDs patients "Mifrakim Tz'eirim", Haifa, Israel.
²¹ Relapsing Polychondritis Foundation, International Relapsing Polychondritis Research Network, Walnut Creek, CA, USA.
²² Canadian Arthritis Patient Alliance, Toronto, ON, Canada.
²³ Department of Rheumatology, Austin Health, Heidelberg, Australia.
²⁴ Rheumatology Unit, The Queen Elizabeth Hospital, Woodville South, Australia.
²⁵ Discipline of Medicine, University of Adelaide, Adelaide, Australia.
²⁶ Crystal Run Healthcare, Middletown, NY, USA.
²⁷ Irish Children's Arthritis Network, Tipperary, Ireland.
²⁸ Department of Medicine, University of Otago, Wellington, New Zealand.
²⁹ Centre for Rheumatology and Department of Neuromuscular Diseases, University College London, London, UK.
³⁰ National Institute for Health Research University College London Hospitals Biomedical Research Centre, University College London Hospitals National Health Service Foundation Trust, London, UK.
³¹ Department of Rheumatology, Northwick Park Hospital, London North West University Healthcare NHS Trust, London, UK.
³² Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia.
³³ HealthPartners, St Paul, MN, USA.
³⁴ Division of Rheumatology, Allergy, and Immunology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
³⁵ Division of Rheumatology, Department of Medicine, University of California San Francisco, San Francisco, CA, USA.

PMID: 34316727
PMCID: PMC8298011
DOI: 10.1016/S2665-9913(21)00175-2

Abstract

Background: The impact and consequences of the COVID-19 pandemic on people with rheumatic disease are unclear. We developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey to assess the effects of the COVID-19 pandemic on people with rheumatic disease worldwide.

Methods: Survey questions were developed by key stakeholder groups and disseminated worldwide through social media, websites, and patient support organisations. Questions included demographics, rheumatic disease diagnosis, COVID-19 diagnosis, adoption of protective behaviours to mitigate COVID-19 exposure, medication access and changes, health-care access and communication with rheumatologists, and changes in employment or schooling. Adults age 18 years and older with inflammatory or autoimmune rheumatic diseases were eligible for inclusion. We included participants with and without a COVID-19 diagnosis. We excluded participants reporting only non-inflammatory rheumatic diseases such as fibromyalgia or osteoarthritis.

Findings: 12 117 responses to the survey were received between April 3 and May 8, 2020, and of these, 10 407 respondents had included appropriate age data. We included complete responses from 9300 adults with rheumatic disease (mean age 46·1 years; 8375 [90·1%] women, 893 [9·6%] men, and 32 [0·3%] participants who identified as non-binary). 6273 (67·5%) of respondents identified as White, 1565 (16·8%) as Latin American, 198 (2·1%) as Black, 190 (2·0%) as Asian, and 42 (0·5%) as Native American or Aboriginal or First Nation. The most common rheumatic disease diagnoses included rheumatoid arthritis (3636 [39·1%] of 9300), systemic lupus erythematosus (2882 [31·0%]), and Sjögren's syndrome (1290 [13·9%]). Most respondents (6921 [82·0%] of 8441) continued their antirheumatic medications as prescribed. Almost all (9266 [99·7%] of 9297) respondents adopted protective behaviours to limit SARS-CoV-2 exposure. A change in employment status occurred in 2524 (27·1%) of 9300) of respondents, with a 13·6% decrease in the number in full-time employment (from 4066 to 3514).

Interpretation: People with rheumatic disease maintained therapy and followed public health advice to mitigate the risks of COVID-19. Substantial employment status changes occurred, with potential implications for health-care access, medication affordability, mental health, and rheumatic disease activity.

Funding: American College of Rheumatology.

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Conflict of interest statement

JSH reports grants from Childhood Arthritis and Rheumatology Research Alliance and Rheumatology Research Alliance; and personal fees from Novartis, Pfizer, and Biogen, outside of the submitted work. JWL reports grants from Pfizer, outside of the submitted work. JAS reports grants and personal fees from Bristol-Myers Squibb; and personal fees from Gilead, Inova Diagnostics, Optum, and Pfizer, outside of the submitted work. CH reports personal fees from AstraZeneca and Aurinia Pharmaceuticals, outside of 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, Johnson & Johnson, Mallinckrodt, Novartis, Pfizer, Roche, Sandoz, Sanofi, Sobi, and UCB, outside of the submitted work. SES is supported by the Vasculitis Clinical Research Consortium and Vasculitis Foundation outside of the submitted work. KLD reports grants from Novartis, Sobi, National Institutes of Health, and Horizon Bio, outside of the submitted work. EFM reports that the Liga Portuguesa Contra as Doenças Reumaticas received support for specific activities: grants from Abbvie, Novartis, Janssen-Cilag, Lilly Portugal, Sanofi, Grünenthal SA, MSD, Celgene, Medac, Pharmakern, GAfPA, AMGEN, A Menarini Portugal; grants and non-financial support from Pfizer; and non-financial support from Grünenthal GmbH and Tilray, outside of the submitted work. DPR is the volunteer Vice President of the Canadian Arthritis Patient Alliance, which is primarily supported by independent grants from pharmaceutical companies. DPR reports consulting fees from NovoNordisk Canada and speaking fees and an honoraria from Eli Lilly Canada, outside of the submitted work. DPR also lives with rheumatoid arthritis. SB reports personal fees from Novartis, AbbVie, Pfizer, and Horizon Pharma, outside of the submitted work. RG reports personal fees from AbbVie New Zealand, Cornerstones, Janssen New Zealand; and personal fees and non-financial support from Pfizer New Zealand, (all <$10 000) outside of the submitted work. PMM reports personal fees from Abbvie, Eli Lilly, Janssen, Novartis, Pfizer, and UCB; and grants and personal fees from Orphazyme, outside of 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 of the submitted work. PS reports honoraria from being a social media editor for @ACR_Journals, outside of the submitted work. ZSW reports grants from National Institutes of Health, BMS, and Sanofi; and personal fees from Viela Bio and MedPace, outside of the submitted work. JY reports personal fees from Pfizer and Eli Lilly, and grants and personal fees from Astra Zeneca, outside of the submitted work. ES is a Board Member of the Canadian Arthritis Patient Alliance, which is a patient-run, volunteer-based organisation whose activities are primarily supported by independent grants from pharmaceutical companies. All other authors declare no competing interests.

Figures

**Figure 1**
Survey respondent inclusion and exclusion criteria *We used these criteria as a consequence of limitations to survey design in which participants were not required to enter values for all questions, which led to questions being easily missed; after analysing the missing data pattern and the importance of patient characteristics when describing the sample, we decided to exclude for missing demographics.

**Figure 2**
Employment changes reported by patients with rheumatic disease in the early stages of the COVID-19 pandemic The spheres indicate the percentage of change noted in each employment status between Jan 1, 2020, (grey spheres) and at the time of the survey response (blue spheres). Arrow directions depict migration between the different categories. Detailed data are provided in the appendix (p 43).

See this image and copyright information in PMC

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Immediate effect of the COVID-19 pandemic on patient health, health-care use, and behaviours: results from an international survey of people with rheumatic diseases

Collaborators

Affiliations

Immediate effect of the COVID-19 pandemic on patient health, health-care use, and behaviours: results from an international survey of people with rheumatic diseases

Authors

Collaborators

Affiliations

Abstract

Conflict of interest statement

Figures

References

Grants and funding

LinkOut - more resources

Full Text Sources

Miscellaneous