September is Arthritis Awareness Month in Canada. As part of this, I'm doing a series of posts about initiatives by different organizations. The common theme of these will be dealing with the topic of working when you live with arthritis.
The Arthritis Research Center of Canada is a very cool nonprofit organization. For one, they’re the creators of the banner, marking and Arthritis Awareness Month in Canada. They're asking that you use this banner on your Facebook page, blog or anywhere else to help raise awareness throughout September.
Last week, I talked to Pam Rogers, Research Coordinator with the ARC, about an exciting new study called Making It Work.
But first, a bit of background… Created in the year 2000, the ARC’s mission is to perform research on all aspects of arthritis. The research is consumer-driven, focusing on quality of life issues, care outcomes and more. The ARC has a Consumer Advisory Board of individuals who all live with different forms of arthritis. All research projects are checked by the CAB to ensure relevance to the lives of people with arthritis.
One of the researchers who works with the ARC is Diane Lacaille (she's also practicing rheumatologist). Her areas of interest include work disability, gaps in care, and aboriginal people and arthritis. She's done a lot of work in the area of arthritis and employment. In her 2005 article Arthritisand Employment Research: Where Are We? Where Do We Need to Go?, She quoted numbers that show just how pervasive and important this problem is.
"Arthritis and musculoskeletal conditions are the leading cause of longterm work disability in Canada and the US, with an estimated yearly cost of $13.7 billion in Canada. In rheumatoid arthritis, reported rates of work disability are remarkably high, ranging from 32% to 50% 10 years after RA onset, and increasing to 50% to 90% after 30 years. Studies have shown that work disability starts early in the course of RA, emphasizing the need for early interventio.”
(Note: I asked Pam whether these statistics regarding work disability had changed since the introduction of Biologics. There doesn't seem to be a lot of research on that as of yet. However, based purely on my observation in the last several years, I would guess that the numbers are changing. (Correction: I goofed in the information in one of the articles I read that discuss the impact of Biologics on the ability to work, which is positive. However, given that Biologics do not help a significant number of people achieved remission, work disability remains a problem)
What's interesting — or alarming, depending on your point of view — is that there hasn't been a lot of research into interventions and programs that can prevent work loss or improving people's ability to work. If you follow Dr. Lacaille’s work since the article mentioned above, you can see that she's been working on changing that. In a 2007 qualitative study, focus groups discussed issues related to four categories: arthritis symptoms, working conditions, interpersonal difficulties at work, and emotional challenges. The study also identified "fatigue is the aspect of IA [inflammatory arthritis] most limiting employment," as well as a number of other barriers to using supports, accommodation, etc.
Enter Making It Work. This is a study investigating an eLearning program designed to help people with inflammatory arthritis stay employed. It uses a controlled, randomized trial with half of the participants using the eLearning self-management program and half not. Recruitment will take place in several provinces during 2013 and in Ontario in early 2014 (I'll be sure to share information when that happens). This is a completely unique program, utilizing a combination of e-learning modules with group sessions and in-person consultations with employment-related professionals. Preliminary results will be available in 2014.
Sounds like something every person with IA could benefit from, doesn't it? Here comes the best part. Pam told me that when the study is done, Making It Work will be available on the ARC website to everyone. Not just in Canada, but to anyone who has access to a computer and a modem. And just as importantly, "it will always be free." (Correction: after further discussion, an amendment to this. As there is a cost associated with running the program, participating in it will likely have a fee. However, as the ARC is a nonprofit organization, fees will reflect this)
Stay tuned. I'll be sure to keep you posted.
If you live in British Columbia, Alberta or Ontario and want to get more information or be part of the study, email MakingItWorkATarthritisresearchDOTca.
I have exciting plans for later in the month of September, including a new release. To be the first to know what happens, sign up for the newsletter here (scroll to bottom of the page)
 Lacaille, Diane et.al., "Arthritis and Employment Research: Where Are We? Where Do We Need to Go?" (J Rheumatol 2005;32 Suppl 72: 42-45)
 Lacaille, Diane, et.al. , "Problems Faced at Work Due to Inflammatory Arthritis: New Insights Gained from Understanding, Patient’s Perspectives." Arthritis & Rheumatism (Arthritis Care & Research) Vol. 57, No. 7, October 15, 2007, pp 1269–1279