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

Behind the Mirror of Self Management

I was reading a study on PubMed: Sorting Through The Evidence for the Arthritis Self Management Program and the Chronic Disease Self Management Program.

It was written in 2011 and is an analysis of previously published trials and articles about the two different self-management courses. Teresa J Brady, PhD is the contact person on the study which was done by a team of researchers.  She is presenting at the American College of Rheumatology (ACR) this year in a session that includes Kelly Young, aka RAWarrior, Dr Jeffrey Curtis and Elizabeth Riggs, RN. They'll be discussing the ways doctors can enhance their practice of medicine using patient engagement and self-management support strategies.

Through reading on the Rheumatoid Patient Foundation website I learned about the talk at the ACR and so looked to see what Teresa Brady had published. She sounds as if she is immersed in the field of self-management.

Taking a self management course is an eye opener for a chronic disease patient. Whether your coping skills are excellent or you are not so confident, you can learn more.  I took the course twice - once online and once in person. They were both effective in similar yet different ways. 

                                                 This is the book used with the online Stanford course

The online course is more convenient and is accessible no matter where you live. The other members were really supportive and helpful at all hours of the day and nigh when it was convenient. However there is no substitute for real people. The real-life course I attended is offered by The Arthritis Society in Toronto and other centers in Canada.

Social engagement is said to be a factor in living a long life. Do you think that online social engagement is as powerful as being involved with real life people? Also I have heard it said that the best way to live many years is to have a chronic condition and take very good care of it.

When I mentioned Behind the Mirror of Self Management I was thinking of the scene in The Wizard of Oz where Dorothy and the Tin Man,Cowardly Lion and the Scarecrow find that the Great and Powerful Oz is just an ordinary man.

In the case of self management the person behind the mirror is also an ordinary person. It's us.  We're the great and powerful people in self management.  No matter how good a program is we are the ones who make it work for ourselves and the others in it.

There is proof of benefits based on the results in Teresa Brady's paper. The idea that changing some of your behaviour can change your heath is not a new one. It's tried and true but when you suddenly find that you are sick it's hard to get past the psychological impact that can cause depression and anxiety. "Health distress" was a phrase that applied to me for years after diagnosis. 

Sometimes I felt that doctors were my main social contacts outside of work and home. Obviously that was a situation that needed work.

I would say that if you have never tried a self management course that it's a good idea to give one a try. Then if your doctor comes back from the ACR ready to adopt this strategy you can give him the benefit of your own insight. That would be empowering.












This year in addition to our exhibit booth, RPF Founder Kelly Young, RPF Advisory Board Member Dr. Jeffrey Curtis, and RPF Member and Registered Nurse Elizabeth Riggs, PhD will be speaking together at one of the sessions. They will present along with Theresa Brady of the Centers for Disease Control & Prevention, for a combined session titled: Enhancing Clinical Practice With Patient Engagement and Self-management Support Strategies.

A Little Steamed about Somatic Symptoms

You may know that I read papers and abstracts on PubMed on a regular basis and every day I post a link to a research paper that interests me or seems relevant to current online conversations.  

                                                                 bmi-online.nl
When I found one called "Negative and positive illness representations of rheumatoid arthritis" it made sense to me that there seem to be two groups among RA patients. "The smaller group (43%) ... has a negative representation of their illness, attributed more symptoms to their condition and reported stronger perceptions of the consequences, chronicity and cyclicality of their condition, and lower control compared to the positive representation group (57%). (I'm taking chronicity to refer to whether the issue is chronic or acute.)

                                       thiran-muru-arul.blogspot.com

I wanted to be sure that I knew what was meant by the term "illness representation" so I googled and found this definition on the site of the National Cancer Institute. It is the "patient's beliefs and expectations about an illness or somatic symptoms" and determines how you cope with the illness.

So in the article about RA it seems some of us are more negative in our feelings about it. And the ones who are more negative have "higher levels of pain and functional disability and, longitudinally, with increases in levels of pain, functional disability and distress." 

That makes sense to me. It sounds as though the group with negative perceptions have good factual reasons for these feelings.  Their reasons are based on facts and on their actual condition more than on their beliefs and expectations.

It upsets me when a physical illness is associated with feelings that patients may have about it and turned around to a perception problem rather than an actual physical problem.  

                                    teachercarilla.blogspot.com

It's important to treat the body and also the mind but I'd rather start with healing the body.

I also found a lengthy neurology article about treating patients with no apparent disease, where the problems are functional.  It is almost a guide to What Not To Say To The Doctor in one section of this detailed article.

I found it at this link:  http://jnnp.bmj.com/content/76/suppl_1/i2.long  You may have to sign up for the BMJ  to see it.  (it's free)

Clinical Studies

Anxiety was the main reason that I started reading medical journal articles.  It's almost like an amusement park - you're up, then you're down.  There are so many complications I have read about that I don't have.  As a patient usually watchful waiting is the best idea for me.  So goodbye to cachexia and amyloidosis for now, not to mention interstitial lung disease.

The last study I read appears here http://www.ncbi.nlm.nih.gov/pubmed/22709490

A study of the prevalence of sicca symptoms and secondary Sjögren's syndrome in patients with rheumatoid arthritis, and its association to disease activity and treatment profile. 

CONCLUSION: Among the 307 RA patients, 28% had at least one sicca symptom. The estimated minimum of prevalence of sSS in 307 RA patients was 3.6%. Secondary Sjögren's syndrome was not found in RA patients treated with biologics such as TNF blockers.

Well I wish that conclusion about not seeing Secondary Sjogren's in patients treated with TNF blockers were accurate in people outside the sample that was used.  Really, I want it to be prophetic.  But it's just another dip in the RA roller coaster.

Could they be implying that it prevents the onset of Sjogren's Syndrome in Rheumatoid Disease? That would be a good reason to tip the balance in favour of biologics for RA treatment if you ask me for my opinion.

Sjogren's is unpleasant to deal with, treating the symptoms is costly and it also adds limitations to one's life.