Help With RA Treatment Decisions: ANSWER-2 or a Decision Aid

My friend commented last week that in 30 years with RA she had never seen the new and far more helpful type of pamphlet or booklet called a Decision Aid. My experience was the same as hers - the only time I ever saw a decision aid was during training to be a Peer Mentor, so that I could be an advisor to people who were newly diagnosed. Decision Aids are are much more useful than an informational pamphlet.

Now imagine how useful it would be to have an interactive decision aid. That's ANSWER-2, a new tool to help patients make decisions about starting a new drug or staying on their current treatment if their doctor has recommended a biologic drug. Right now it is at the prototype stage and it is being tested against a decision aid. The researchers and patients who created it are conducting a randomized controlled trial. If you join you will be testing either ANSWER-2 or the paper based decision aid.

Background
When I was finally diagnosed with RA it was almost two years after I first developed symptoms. At that time I assumed that getting good treatment from a specialist would make me better. I was wrong then, though the treatment did help. The good news is that better results are more likely to happen now than in the 1980's
I was so sick at that time that I believe I would have taken any medical treatment suggested by a doctor to get my life back to what it had been like. I knew next to nothing about rheumatoid arthritis itself, let alone the possibilities for treatment so I did exactly what my rheumatologist suggested.

Things are different now

Before the internet was available to us all, information was scattered and hard to put together. The facts I knew did not form part of a big picture. My doctor would talk about possible new treatments but my part in the decision always slowed down the process by months because I had to find and learn what I needed to know.

It was a puzzle, not a big picture.

When I heard of a way that would help me to make important decisions I was really excited by the idea. Now that a Decision Aid can be an online interactive tool it can be a whole new ball game!

Here's what happened: 
I had reached the point where my doctor suggested it was time to think about a change in the drug I was taking for rheumatoid arthritis. After 30+ years with RA and 8 years on my previous drug, it no longer seemed to be working. 

That made me a candidate to try ANSWER-2 so I volunteered. It was developed by Arthritis Research Canada (ARC) as a research project funded by the Canadian Institute for Health Research (CIHR), and is based on scientific evidence, not information from manufacturers.

That background helped because with government funding I knew that the intention of the tool was not to promote a particular drug. It was also reassuring to me that patients were involved in the development of ANSWER-2 and participated on the research team. 

The program started by asking me about my priorities and what I thought was most important. It helped me to balance the convenience vs my anxiety about a change vs worries over starting a new drug. This was exactly what I remembered going through the first time in other decisions about new drugs.

So with those personal preferences entered, the next area dealt with the potential treatments - On to the decision area! When I saw the possible choices I found that they were ranked in a way that made perfect sense to me.

This is what the first page of ANSWER-2 looks like. Sorry it's little small.

Another benefit in using it was a description of the drugs and the comparison of the risks and benefits of each one laid out right in front of me in columns. That really helped me with my choice.

As I went through the screens I could also watch stories from real patients as a part of the program (I even knew one of them).

Since this is a prototype more people are needed to test it. At this moment the trial is only available in Canada and the US. Participating in the trial will help the investigators learn whether ANSWER-2 or a standard decision aid is more empowering to patients.

To try this out it you must have rheumatoid arthritis and be considering a decision about biologic therapy - whether to start t or to change to another drug. If you are eligible you will randomly be assigned to either the online ANSWER-2 or else a Medication Guide in a pdf version. If you test the pdf you will have access to the online version at the end of the trial.

Click this link to apply if you are in Canada. The heading on the page is "SuPER: Supporting Patient care with Electronic Resource"

OR

For US users please contact Sharan Rai at SRAI1@mgh.harvard.edu to enroll in the trial.

For US and Canada: 


To learn more, please contact Jasmina Geldman at jgeldman@arthritisresearch.ca or 1-877-871-4575. She can answer all of your questions.

Tweeting Links to Research Studies

When I decided to use Twitter I thought that tweeting a link every morning to a paper or abstract about Rheumatoid Arthritis would be useful to others and a way to contribute to the conversation. There is so much new information coming out always that staying current is a problem for everyone.

That plan has worked out well. I can stay abreast of what's new and it's easy to share on Twitter. You might wonder how I choose among all the new papers. It's easy - I pick what interests me. Here are some reasons for avoiding certain topics.

First I don't post animal tests because I want to find knowledge that is closer to being applicable to people like me.

We could test on this rat

Second I need to have at least some understanding of the subject matter. That's why I did not post this one:
Rho-GTPase signaling in leukocyte extravasation: An endothelial point of view.  

Extravasation?

Third, case studies don't seem broadly relevant to me as a patient.

Finally I want to learn something from the links I find, even if it's only a small insight or fact.

Here's an example of a study I plan to Tweet: 

A proof-of-concept study of ANSWER, a web-based methotrexate decision aid for patients with rheumatoid arthritis.

"For patients with rheumatoid arthritis (RA) who are considering methotrexate, we have developed a web-based patient decision aid called the ANSWER (Animated, Self-serve, Web-based Research Tool)"

When I first heard of decision aids I was really excited by the concept until I found out that we were talking about pamphlets. There's been a lot of progress since that day years ago and now you can find interactive fact-based online tools that are truly geared to the needs of an individual. The ANSWER paper tested a method of helping patients choose whether or not to take the usual first step in the treatment of RA: using methotrexate.

When I looked for more information (partly because I liked the poster picture) I found another paper by Dr Li that provided more background about the usability testing of this tool. That's the beauty of looking on the internet - you usually find even more than you expect.

That's why the above link is the perfect choice. This research is done by Arthritis Research Canada in BC so it's Canadian and very applicable to people I often talk to online. Of course the decision whether or not to take methotrexate is one I made long ago, but it applies directly to people with a new diagnosis of RA, and there are many of them online.

My theory is that it's harder to find answers when you don't know the questions. That's one of my reasons I like to share useful tools and answers I find on the internet.

Also when I start my searches with links to papers published in a journal that is included on PubMed it makes me feel more comfortable with the likelihood that the facts are accurate. 

And here's the link to where you can actually try this web-based decision aid yourself :

Answer Tool at ARC Canada

Crossroads picture from ARC, others my own

September is Arthritis Month in Canada

This is the new banner from The Arthritis Research Centre of Canada. You'll start seeing it on September 2nd, just in time for Arthritis Month in Canada. You can download it and add a copy to your Facebook page or blog at this link. Please use it to let people know that this is our month to tell our stories.

One look at it and you can see the main message: Arthritis is everyone's disease, no matter what your age or background. Unfortunately it does hit some groups harder than others and that's where research plays such a big part - we need to find out why some people are more susceptible. In doing research hopefully we will find out more about the disease and that will help all of us.

There are other ways that it can be seen as everyone's disease. Many of us see the effects through our friends or relatives with arthritis. If we are among the few who don't know anyone with it, we are still affected by the huge cost to society and to the productivity of our countries.  In Canada alone it cost the economy 22.3 billion dollars in the year 2000, and even with a cost that huge we are only #11 in treatment and funding. The US is ranked very close to us, but of course their costs are much higher given the relative size of the population.

Internationally joint and muscle problems are the most common causes of disability and the frequency is rising.  

We can make a difference by advocating for more research and by donating to fund research, but the biggest difference we can all make is  by looking at what are called "modifiable risk factors". It should surprise no one to find out that Dr Leachon is right on the money with this prescription which he is willing to share with us.

                         Dr Leachon's Healthy Lifestyle Checklist

In an article related to Dr Leachon's guidelines here are 5 areas where change for the better will cause you to have a longer life and to be healthier for a greater percentage of your years. They are smoking, alcohol, diet, physical activity and stress. You know which one is your weak point!  So to celebrate Arthritis Month just pick one of the risk factors that you can improve and work on it! 

This has led to my husband getting more advice from me on healthy choices. His reaction: "Oh no, this is stressing me out."