Long-term health resource utilization and total economic burden following diagnosis of systemic autoimmune rheumatic diseases: a population-based study

Project number: 
Approval date: 
Tuesday, April 28, 2015
Principal Investigator: 
University of British Columbia (UBC)
Funding Agency: 
BC Lupus Society,UBC Department of Medicine,Canadian Institutes of Health Research(CIHR),Canadian Ar
Datasets requested: 
MSP Registration & Premium Billing(BC Ministry of Health)
Consolidation - demographic (Ministry of Health)
bc cancer
Medical Services Plan (BC Ministry of Health)
consolidation - census geocodes
Researcher collected
Deaths (BC Vital Statistics Agency)
Hospital Separations (BC Ministry of Health)
Consolidation registry (Ministry of Health)
Income band (Statistics Canada)
PharmaCare (BC Ministry of Health)
Research objective: 

Project Objectives:
We propose to build on our experience with population-based research using Population Data BC health databases (formerly British Columbia Linked Health Databases) to comprehensively study the disease and economic burden of Systemic Autoimmune Rheumatic Diseases (SARDs) in a population-based cohort of SARDs in BC. By studying SARDs as a group rather than as individual diseases, we will overcome the deficiencies of other studies on SARDs whose findings have been undermined by smaller samples.

Epidemiologic data on SARDs is scarce. In particular, contemporary population estimates for disease burden are limited. Our hypothesis is that direct medical costs of SARDs are high and underappreciated as important drivers of health care costs. We intend to establish health resource use and direct medical costs in SARDs cases compared with the general population. Most cost estimates produced for individual SARDs have been cross-sectional and determined from populations with varying durations of disease. We will address this by analyzing the direct costs incurred by incident cases, and continuing this for years after diagnosis. And given that SARDs, being little-known and presenting with generalized symptoms, can take years to diagnose, we will extend our longitudinal analysis for up to 5 years before diagnosis. This will give insight as to the types of health resources consumed leading up to diagnosis and their associated costs. Data that are unavailable at the population level, including body mass index (BMI), smoking history, marital status, education, and productivity losses, will be collected from a sample of the SARDs cohort and a control sample. This will allow us to estimate the gross and net indirect costs of SARDs, and, in combination with data from the administrative health databases, identify significant drivers of all costs.

Our primary objectives are:
1) To quantify the long-term gross and net direct medical costs of SARDs.
2) To illustrate how the pattern of health resource consumption and costs incurred by SARDs cases changes over the disease course.
3) To assess the direct medical costs and health resources consumed in the years preceding the formal diagnosis of SARDs.
4) To quantify the indirect (lost productivity) costs of SARDs over time.
5) To identify clinical and demographic drivers of all these costs.


Journal Publication

  • McCormick N, Marra CA, Sadatsafavi M, Kopec JA, Aviña-Zubieta JA. Excess Productivity Costs of Systemic Lupus Erythematosus, Systemic Sclerosis, and Sjögren’s Syndrome: A General Population-Based Study. Arthritis Care Res. 2019 Jan;71(1):142–54.
  • 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):1247–58.
  • McCormick N, Reimer K, Famouri A, Marra CA, Aviña-Zubieta JA. Cohort Profile: 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.

Page last revised: September 2, 2019