RA Research: Joint Protection Study
One of the ways we can help the RA community is by participating in research related to different kinds of arthritis. An exciting new study using web-based applications to teach people about joint protection in RA is looking for participants. This post outlines the study and how you can sign up to participate.
Rashid Kashani is an occupational therapist (OT) in Canada and a PhD student at the University of Plymouth in the UK. Please worked in rheumatology for close to 20 years, “including working for several years on a dedicated rheumatic disease unit.” He says jokingly that his spouse “was apparently so supportive of my work that she coincidentally became diagnosed with RA in the 3rd year of my PhD study!” He receved his MScOT from the University of Exeter, focusing on hand assessments, particularly grip strength testing results, for people living with RA. “One of my new main interests is the use of social media, web based applications and e-learning to enhance health literacy and overcome barriers to accessing quality health information,” Rashid explains. He recently agreed to tell us more about this study.
What is the Joint Protection Study?
Joint protection is one of the means of self-management that is frequently discussed as a coping strategy to better manage day to day activities when a person is living with a rheumatic disease, but these techniques are often taught in group classes that people have to attend in person at a specific place and time. Often, people living with RA are "lumped in" with people living with OA and the specific needs of people living with RA can be overlooked. For example, I've been told via the initial phases of my research that content regarding work is not covered, intimacy is not covered and the comparison of an OA and an RA joint is also not covered in some cases. In addition to the content issue, the flexibility of available resources can be an issue. The RA clients are often younger, working, raising family and/or taking care of aging family as well. The ability to travel to a major urban center to learn about this active management is a challenge, as well as the costs of being away from work, family obligations and the need to time attendance to such as program with the other demands of daily life. As a result, some cannot benefit from being able to get this information.
Creation of an evidence-based online resource that could be evaluated for content while also being flexible seems like a logical step to providing links to these missed opportunities. However, traditional web pages are also often static, have limited opportunity for interaction and need to be flipped through one at a time. 3D media is on the rise and the literature also indicates that this more immersive medium may provide a novel learning experience, so this particular joint protection resource has been constructed in a web based virtual world (Second Life). This is a resource where you can feel like you are walking through it and can interact with both the objects as well as other people if you choose to.
What is the goal of the study and how will it be used?
There are multiple goals for this study, some of which have already been completed. The completed goals included interviewing experts about expected content for learning about joint protection while living with RA. This was done with both OTs with expertise in RA, but also done with people living with RA who had recently taken the traditionally taught RA management classes. The other goals completed included building the virtual world displays based on the expert input (23 in all and taking me a year because I am not a computer programmer), having all the experts try out the displays and provide feedback and then determining what sorts of things might be measurable if people were using this resource and possibly benefitting from it.
The last goal, and what I am recruiting people for right now, is to look if is possible to test the effectiveness of this resource using a very large group of people. In order to do this, it's important to look at a much smaller group of people, as I am doing right now (50 total) and to see what the initial results are, such as differences between no program access versus program access and even how many drop out.
Ultimately, I would like to see this method used in the development of resources for people living with RA, but I am also hoping that this will create an opportunity to provide a new set of flexible resources that are cost effective (free) and specific to this population of clients. My intent is to leave this as an open access resource, and once I've recovered from completing this PhD, to continue to develop other RA resources themed around energy conservation, pain management and relaxation using the same methods as well as developing other resources specific to OA, fibromyalgia Lupus, ankylosing spondylitis, etc.
Who can sign up to participate in the study?
This study is open to anyone who is over 18 years of age with a primary diagnosis of RA. As it is online, it can be done from anywhere in the world.
How much time is required to complete a session?
So far, most people are taking about an hour to do the program and the forms take about 10 minutes. People can and do go back to look at things as often as they would like, but the minimum time is about an hour.
What’s the deadline for signing up?
I hope to have all of the recruitment done by the end of January 2014, but will be allowing access afterwards as my plan is to keep this as an open access resource for people living with RA.
If you’re interested in participating in the joint protection study, a webpage has been created with more information and a quick preview. Information on how to sign up is at the end of the video.
Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain. Her personal blog is The Seated View.