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

Claire Adams; Elsa-Lynn Nassar; Marie-Eve Carrier; Linda Kwakkenbos; Richard S Henry; Gabrielle Virgili-Gervais; Sophie Hu; Susan J Bartlett; Catherine Fortuné; Amy Gietzen; Karen Gottesman; Geneviève Guillot; Marie Hudson; Amanda Lawrie-Jones; Nancy Lewis; Vanessa Malcarne; Maureen D Mayes; Scott B Patten; Michelle Richard; Maureen Sauvé; John Varga; Joep Welling; Robyn Wojeck; Luc Mouthon; Andrea Benedetti; Brett D Thombs; SPIN Investigators

doi:10.1177/23971983241262655

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

J Scleroderma Relat Disord. 2024 Oct;9(3):242-247. doi: 10.1177/23971983241262655. Epub 2024 Aug 5.

Authors

Claire Adams^{1

2}, Elsa-Lynn Nassar^{1

3}, Marie-Eve Carrier¹, Linda Kwakkenbos^{4

5

6}, Richard S Henry^{1

2}, Gabrielle Virgili-Gervais¹, Sophie Hu¹, Susan J Bartlett^{7

8}, Catherine Fortuné⁹, Amy Gietzen¹⁰, Karen Gottesman¹¹, Geneviève Guillot¹², Marie Hudson^{1

7}, Amanda Lawrie-Jones^{13

14}, Nancy Lewis¹⁵, Vanessa Malcarne^{16

17}, Maureen D Mayes¹⁸, Scott B Patten^{19

20

21}, Michelle Richard²², Maureen Sauvé^{23

24}, John Varga²⁵, Joep Welling²⁶, Robyn Wojeck²⁷, Luc Mouthon^{28

29}, Andrea Benedetti^{7

8

30

31}, Brett D Thombs^{1

2

3

7

30}; SPIN Investigators

Affiliations

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.

PMID: 39381050
PMCID: PMC11457775 (available on 2025-10-01)
DOI: 10.1177/23971983241262655

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.

Keywords: COVID-19; employment; financial well-being; scleroderma; systemic sclerosis.