2015 Grant Awards
The posters and papers listed below each grant arise from work facilitated through the grant funding.
The Economic Challenges of SLE: Measuring and Mitigating the Impact
Principal Investigator: Clarke, A. (PDF)
Co-investigators: Elliott, S; Farewell, V; Hanly, J; Urowitz, M; Bernatsky, S; Peschken, C; Vinet, E; Pineau, C; Gladman, D; Mosher, D; Fritzler, M; Albert, A; St. Pierre, Y; Chin, R
Individuals affected by SLE experience considerable economic challenges. Their escalating and unpredictable health care costs and perpetual struggle to maintain regular employment and care for their families impact self-esteem, career trajectories, and role definitions. These are major and neglected concerns.
In our CIORA-funded research (07/2015-06/2017), we used a mixed-methods (quantitative/qualitative) approach to better understand these issues. We surveyed 1300 SLE patients on their healthcare utilization and lost productivity and demonstrated that indirect costs resulting from lost productivity in work force and non-work activities exceed direct costs (health care resource utilization) by 4-fold. Further, patients with minimal disease damage incurred substantial indirect costs. We conducted in-depth interviews with patients/patient advocates/physicians to understand how these economic issues affected patients and their families. SLE patients often pursue a less satisfying and financially stable career due to poor public understanding of the disease, limited workplace accommodation, and flawed government/workplace policies. To effect change, we need to look beyond individual or workplace interventions and focus on the systems-level (i.e., institutions, government, policies, and society). We conducted workshops with stakeholders across Canada to identify the priority areas for targeting systems-level action. Priorities included the need for a systems navigator to help patients access benefits, adjustment of the definition of disability to reflect varying degrees of severity and episodic nature of SLE, and development of job-share programs.
Moving forward, we are developing and implementing an integrated knowledge translation (iKT) initiative that supports the co-production of knowledge between researchers and knowledge users. It will address systems-level change to enhance the working life of individuals with SLE and promote public understanding of the disease. We will work with a multi-stakeholder group to leverage the findings from this study and, through stakeholder consultations, webinars, and hackathons, develop systems-level interventions. This research will result in stronger stakeholder partnerships, ideas for specific and actionable systems-level interventions, and increased public awareness of SLE.
- Lupus Society of Alberta Annual Education Day, Calgary, Alberta, February 20, 2016, The Economic Costs of SLE: We want to hear Your Voice. Watch presentation on YouTube channel.
- American College of Rheumatology, San Diego, California, November 2017, Economic evaluation of damage accrual in a nation-wide Canadian SLE Cohort. Choi M, Clarke AE, Urowitz M, Gladman DD, Bernatsky S, Vinet E, Pineau C, Hanly J, Peschken C, Fortin P, Jung M, Barber C, Elliott S, Dixon J
Presented at the 2017 Canadian Rheumatology Association meeting and International Lupus Congress.
Presented at the 2018 Canadian Rheumatology Association meeting and received the Best Abstract by a Rheumatology Resident Award.
Presented at the 2019 Canadian Rheumatology Association meeting.