Changes in work and adequacy of financial resources during COVID-19 among people with systemic sclerosis: A Scleroderma Patient-centered Intervention Network study

Author:

Adams Claire12,Nassar Elsa-Lynn13,Carrier Marie-Eve1,Kwakkenbos Linda456,Henry Richard S12,Virgili-Gervais Gabrielle1,Hu Sophie1,Bartlett Susan J78,Fortuné Catherine9,Gietzen Amy10,Gottesman Karen11,Guillot Geneviève12,Hudson Marie17ORCID,Lawrie-Jones Amanda1314,Lewis Nancy15,Malcarne Vanessa1617,Mayes Maureen D18,Patten Scott B192021,Richard Michelle22,Sauvé Maureen2324,Varga John25,Welling Joep26,Wojeck Robyn27,Mouthon Luc2829,Benedetti Andrea783031,Thombs Brett D123730ORCID,

Affiliation:

1. Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada

2. Department of Psychiatry, McGill University, Montreal, QC, Canada

3. Department of Psychology, McGill University, Montreal, QC, Canada

4. Department of Clinical Psychology, Behavioural Science Institute, Radboud University, Nijmegen, The Netherlands

5. Department of IQ Health, Radboud University Medical Center, Nijmegen, The Netherlands

6. Centre for Mindfulness, Department of Psychiatry, Radboud University Medical Center, Nijmegen, The Netherlands

7. Department of Medicine, McGill University, Montreal, QC, Canada

8. The Research Institute of the McGill University Health Centre, Montreal, QC, Canada

9. Ottawa Scleroderma Support Group, Ottawa, ON, Canada

10. National Scleroderma Foundation, Tri-State Chapter, Binghamton, NY, USA

11. National Scleroderma Foundation, Los Angeles, CA, USA

12. Sclérodermie Québec, Montreal, QC, Canada

13. Scleroderma Australia, Melton, VIC, Australia

14. Scleroderma Victoria, Fitzroy, VIC, Australia

15. The Scleroderma Patient-centered Intervention Network, Montreal, QC, Canada

16. Department of Psychology, San Diego State University, San Diego, CA, USA

17. San Diego State University and University of California, San Diego, CA, USA

18. University of Texas McGovern School of Medicine, Houston, TX, USA

19. Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada

20. Hotchkiss Brain Institute, University of Calgary, Calgary, AB, Canada

21. O’Brien Institute for Public Health, University of Calgary, Calgary, AB, Canada

22. Scleroderma Atlantic, Halifax, NS, Canada

23. Scleroderma Society of Ontario, Hamilton, ON, Canada

24. Scleroderma Canada, Hamilton, ON, Canada

25. Division of Rheumatology, Department of Medicine, University of Michigan, Ann Arbor, MI, USA

26. NVLE Dutch patient organization for systemic autoimmune diseases, Utrecht, The Netherlands

27. The University of Rhode Island, Kingston, RI, USA

28. Centre de Référence Maladies Autoimmunes Systémiques Rares d’Ile de France, Service de Médecine Interne, Hôpital Cochin, Assistance Publique-Hôpitaux de Paris (AP-HP), Paris, France

29. APHP-CUP, Hôpital Cochin, Université de Paris, Paris, France

30. Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada

31. Respiratory Epidemiology and Clinical Research Unit, McGill University Health Centre, Montreal, QC, Canada

Abstract

Introduction/objective: We investigated (1) work status changes during COVID-19, (2) financial resource adequacy, (3) preferences for work requirements (e.g. remote, workplace, mixed) and (4) work requirements versus preferences, among people with systemic sclerosis. Methods: This was a cross-sectional study of participants in the Scleroderma Patient-centered Intervention Network COVID-19 Cohort, which enrolled participants from the ongoing Scleroderma Patient-centered Intervention Network Cohort and externally in April 2020. In August 2022, participants completed questions on work status, financial well-being using the Consumer Financial Protection Bureau Financial Well-Being Scale, work requirements and work requirement preferences. Results: A total of 298 participants with systemic sclerosis were included. Mean age was 58.6 years (SD = 11.4). There were 101 (34%) participants working at the start of the pandemic and still working in August 2022, 179 (60%) not working at the start of the pandemic and still not working, 10 (3%) who stopped working after April 2020 and 8 (3%) who started working. Mean financial well-being did not change from April 2020 to August 2022 (difference: 0.2 points; 95% confidence interval: −1.1 to 0.7). Working participants (N = 109) preferred flexible work requirements (N = 34, 31%) or working entirely remotely (N = 32, 29%), but most were required to work entirely at a workplace (N = 35, 32%) or combined workplace and remotely with a fixed schedule (N = 31, 28%). Conclusion: Work status and financial well-being did not change substantively among people with systemic sclerosis during the pandemic. Flexible work policies may support people with systemic sclerosis to work.

Funder

Scleroderma Manitoba

Scleroderma Victoria

Sclérodermie Québec

Scleroderma Association of British Columbia

canadian institutes of health research

Canadian Institutes of Health Research

Scleroderma New South Wales

Scleroderma Society of Ontario

Scleroderma Queensland

Scleroderma Canada

Scleroderma SASK

Scleroderma Atlantic

McGill Interdisciplinary Initiative in Infection and Immunity Emergency COVID19 Research Fund

Scleroderma Australia

Publisher

SAGE Publications

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