Scientific Study Title

Excess Productivity Costs of Systemic Lupus Erythematosus, Systemic Sclerosis, and Sjogren’s Syndrome: A General Population-Based Study

 

Principal Investigator

Natalie McCormick, Ph.D.

Research Trainee, Arthritis Research Canada

Faculty of Pharmaceutical Sciences, The University of British Columbia

 

Research Supervisors:

J. Antonio Aviña-Zubieta, M.D. M.Sc. Ph.D. FRCPC
Senior Research Scientist, Arthritis Research Canada
Associate Professor of Medicine, The University of British Columbia

Carlo A. Marra, Pharm.D. Ph.D.
Research Scientist, Arthritis Research Canada

Study Start Date: July 2015

Study End Date: December 2016

 

What were the key findings?

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 ARC’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.

 

Co-Investigators

Jacek Kopec, M.D. Ph.D.
Senior Research Scientist, Arthritis Research Canada
Professor, School of Population and Public Health, 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.

 

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

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