How Much Extra Time Do People with Certain Systemic Autoimmune Rheumatic Diseases (SARDs) Lose from Paid and Unpaid Work, and What Are the Costs?
Scientific Study Title
Excess Productivity Costs of Systemic Lupus Erythematosus, Systemic Sclerosis, and Sjogren’s Syndrome: A General Population-Based Study
Study Start Date:
July 2015
Study End Date:
December 2016
What Did We Find?
We focussed on three systemic autoimmune rheumatic diseases (SARDs): systemic lupus erythematosus, systemic sclerosis/scleroderma, and Sjogren’s syndrome. Employed persons with a SARD did not miss any more work than employed persons without a SARD. However, it was harder for them to perform their paid and unpaid work. Persons with SARDs were also more likely to be work disabled (not employed at all, for health reasons). The extra lost-work costs of SARDs ranged from $3,582 to $4,494 per-person each year. This study uncovered the ‘hidden’ lost-work costs of SARDs. Future studies should look at how flexible hours or job retraining may help reduce these costs for SARD patients and society.
What Was Done?
Systemic autoimmune rheumatic diseases (SARDs) are a group of inflammatory arthritis disorders that can cause fatigue, pain, and organ damage. They tend to strike females during their peak parenting and working years. Though SARDs can limit patients’ ability to work, the full cost impact is unclear. Most studies only included costs for time missed from paid work, and not work time missed by homemakers, students, and retired people. To better understand these costs, we surveyed a sample of BC residents about their paid and unpaid work (i.e. cooking, cleaning, yard work, home repairs, looking after children, volunteering). Some had been diagnosed with a SARD, but others were chosen because they did not have a SARD. We compared the survey responses from each group to determine the ‘extra’ lost-work costs from SARDs.
Who Was Involved?
This study was led by Natalie McCormick as part of her Ph.D. thesis. A total of five researchers participated in the study. Members of Arthritis Research Canada’s SARD Consumer Advisory Committee helped design the study and test the survey. 671 BC residents completed the survey: 296 with SARDs and 375 without SARDs.
The Research Team
Principal Investigator
Natalie McCormick, Ph.D. Research Trainee, Arthritis Research Canada Faculty of Pharmaceutical Sciences, (The University of British Columbia)
Research Supervisors:
J. Antonio Avina-Zubieta, MD, MSc, PhD, FRCPC, Senior Scientist, Rheumatology, Arthritis Research Canada (The University of British Columbia)
Carlo Marra, BSc (Pharm), PharmD, PhD, Research Scientist, Pharmacoepidemiology, Arthritis Research Canada (University of Otago)
Co-Investigators
Jacek Kopec, MD, MSc, PhD, Senior Scientist Emeritus, Epidemiology, Arthritis Research Canada (The University of British Columbia)
Larry Lynd, B.S.P. Ph.D. Professor, Faculty of Pharmaceutical Sciences, (The University of British Columbia)
Mohsen Sadatsafavi, M.D. Ph.D. Assistant Professor in Health Outcomes Research, Faculty of Pharmaceutical Sciences, (The University of British Columbia)
Research Staff
Lindsay Belvedere, M.P.H., Research Assistant, Arthritis Research Canada
Kathryn Reimer, M.O.T., Research Assistant, Arthritis Research Canada
Lynn Nowoselski, M.P.H., Research Assistant, Arthritis Research Canada
Eric C. Sayre, Ph.D., Research Associate, Arthritis Research Canada
Patient Collaborators
Lianne Gulka, Arthritis Patient Advisory Board, ARC Joyce Ma, Arthritis Patient Advisory Board, ARC
Janis McCaffrey, Consumer Advisory Committee, SARDs-ARC
Marilyn Mulldoon, Sjögren’s Society of Canada and Arthritis Patient Advisory Board, ARC
Alan Pemberton, Consumer Advisory Committee, SARDs-ARC
Who Funded This Research?
To support her Ph.D. training, Natalie McCormick received a Doctoral Research Award from the Canadian Institutes of Health Research. Additional funding was provided by the Canadian Arthritis Network/Arthritis Society, Canadian Institutes of Health Research, and BC Lupus Society.
Related Publications:
McCormick N, Marra CA, Sadatsafavi M, Kopec JA, Aviña-Zubieta JA. Excess Productivity Costs of Systemic Lupus Erythematosus, Systemic Sclerosis, and Sjogren’s Syndrome: A General Population-Based Study. Arthritis Care & Research. doi: 10.1002/acr.23573. https://www.ncbi.nlm.nih.gov/pubmed/29648677
McCormick N, Reimer K, Famouri A, Marra CA, Aviña-Zubieta JA. Filling the gaps in SARDs research: collection and linkage of administrative health data and self-reported survey data for a general population-based cohort of individuals with and without diagnoses of systemic autoimmune rheumatic disease (SARDs) from British Columbia, Canada. BMJ Open. 2017 Jun 21;7(6):e013977. https://www.ncbi.nlm.nih.gov/pubmed/28637725
Further studies related to this work:
McCormick N, Marra CA, Sadatsafavi M, Aviña-Zubieta JA. Incremental direct medical costs of systemic lupus erythematosus patients in the years preceding diagnosis: a general population-based study. Lupus. 2018 Jul;27(8):1247-1258. doi: 10.1177/0961203318768882. https://www.ncbi.nlm.nih.gov/pubmed/29665755
