{"id":1010,"date":"2017-11-20T18:33:08","date_gmt":"2017-11-20T18:33:08","guid":{"rendered":"http:\/\/rheum.ca\/?page_id=1010"},"modified":"2019-09-19T15:10:33","modified_gmt":"2019-09-19T15:10:33","slug":"2015-grant-awards-ann-clarke","status":"publish","type":"page","link":"https:\/\/rheum.ca\/research\/2015-grant-awards\/2015-grant-awards-ann-clarke\/","title":{"rendered":"2015 Grant Awards Ann Clarke"},"content":{"rendered":"

2015\u00a0Grant Awards<\/h1>\n

The posters and papers listed below each grant arise from work facilitated through the grant funding.<\/p>\n

The Economic Challenges of SLE: Measuring and Mitigating the Impact<\/h2>\n

Principal Investigator:\u00a0Clarke, A. (PDF)<\/a>
\nCo-investigators: Elliott, S; Farewell, V; Hanly, J; Urowitz, M; Bernatsky, S;\u00a0Peschken, C; Vinet, E; Pineau, C;\u00a0Gladman, D; Mosher, D; Fritzler, M;\u00a0Albert, A; St. Pierre, Y; Chin, R<\/p>\n

Project Summary<\/h3>\n

Individuals affected by SLE experience considerable economic challenges.\u00a0 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.\u00a0 These are major and neglected concerns.<\/p>\n

In our CIORA-funded research (07\/2015-06\/2017), we used a mixed-methods (quantitative\/qualitative) approach to better understand these issues.\u00a0 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.\u00a0 Further, patients with minimal disease damage incurred substantial indirect costs.\u00a0 We conducted in-depth interviews with patients\/patient advocates\/physicians to understand how these economic issues affected patients and their families.\u00a0 SLE patients often pursue a less satisfying and financially stable career due to\u00a0poor public understanding of the disease, limited workplace accommodation, and flawed government\/workplace policies.\u00a0 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).\u00a0 We conducted workshops with stakeholders across Canada to identify the priority areas for targeting systems-level action.\u00a0 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.<\/p>\n

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.\u00a0 It will address systems-level change to enhance the working life of individuals with SLE and promote public understanding of the disease.\u00a0 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.\u00a0 This research will result in stronger stakeholder partnerships, ideas for specific and actionable systems-level interventions, and increased public awareness of SLE.<\/p>\n

Oral Presentations<\/h3>\n
    \n
  1. Lupus Society of Alberta Annual Education Day, Calgary, Alberta,\u00a0February 20, 2016, The Economic Costs of SLE: We want to hear Your Voice.\u00a0Watch presentation\u00a0on YouTube channel.<\/a><\/li>\n
  2. \u00a0American College of Rheumatology, San Diego, California,\u00a0November 2017, Economic evaluation of damage accrual in a nation-wide Canadian SLE Cohort.\u00a0 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<\/li>\n<\/ol>\n

    Poster Presentations<\/h3>\n

    Presented at the 2017\u00a0Canadian Rheumatology Association meeting and\u00a0International Lupus Congress.<\/p>\n