Sunday, 27 April 2014

It's Just Damage??

Once you have a long history with inflammatory arthritis life can become even more frustrating than when it's a new diagnosis.  
It is not as easy to recognize active disease when much of the joint cartilage has been destroyed and you have many soft tissue changes in or near your joints. You may feel strongly that your body is still being attacked but the RA becomes more subtle in the ways it shows itself. 

I asked my own rheumatologist if the disease ever does burn out, as people used to say it did, and his short answer is "No."

My vision of 'burnt out' means the RA is dead and gone, leaving only the grim aftermath

My friend suggested this topic and it struck a chord with me. Her hands are like mine - one look is enough to tell people we have autoimmune arthritis. She has had it for over 25 years and copes well. What she wants now is a change to a more effective treatment; however her doctor tells her that she does not have enough active joints (5 is the magic number) to justify this. He's been treating her issues with cortisone injections, some general and some in various joints and since November she has had 10 of them. That's almost enough to put you into adrenal failure once the cortisone stops and you are "cold turkey."
As cold as a turkey can get

Since RA is a systemic autoimmune disease it may be active in other areas of your body that do not show up in a standard joint count. So many effects of RA are known as extra-articular, meaning they occur outside of the joint. I read one study done over a period of 46 years that concluded the incidence of these other manifestations of rheumatoid arthritis has not decreased.

My support group friends who have had the same kind of lengthy experience with RA are also seeing new problems showing up as they age.

For example look at Polly who now has lung fibrosis and liver damage. Her rheumatologist kept telling her that the honeycombing picture of her lung base is beautiful... a textbook example. She told him..."well, it’s not your lung with the honeycombing". 

In "Up-To-Date" which is the first choice of many doctors when they make decisions at the point of care you will find this advice: A person with end-stage rheumatoid arthritis has little or no evidence of ongoing inflammation but often has significant joint damage with deformity and loss of joint function. End-stage rheumatoid arthritis treatment includes therapies that reduce pain and slow or prevent additional changes in joint structure and function.

This advice sounds remarkably like it will help you achieve the status quo. While I'm worrying about that I guess you won't be surprised to see this paper* that says patients with later onset of RA (meaning over the age of 58) have more erosions, are more likely to receive steroid medications, and are treated with fewer DMARDS.
*Age at onset determines severity and choice of treatment in early rheumatoid arthritis: a prospective study.

We all hope not to need a wheelchair

I also looked at the musculoskeletal chapter of the Power Study. (Project for an Ontario Women's Health Evidence-Based Report) 

Among the many interesting facts stated, I found out that fewer than half of the women RA patients over 65 in Ontario were on first line treatment (women 49.5% / men 46%). How do we reconcile this with Treat to Target?

It's a struggle for everyone. There are too few rheumatologists, not enough awareness and a real lack of funds. Surely there are better ways of treatment that we can adopt for the future. I hope that constantly improving access to information and more active and aware patients will help make changes.

As it is now those of us with a rheumatologist  have "got lucky". But will we be able to get out of the holding pattern and back to real effective treatment when it's considered "just damage"?

Sunday, 20 April 2014

Sjogren's Syndrome and the National Conference 2014 (Taking Control)

It's spring almost everywhere and time for the National Conference held by the Sjogren's Society of Canada.  "Taking Control" is the name of this year's event.

Spring Crocuses

There is a great deal of evidence that suggests that patient knowledge, skill and confidence with managing chronic disease is a good indicator of better outcomes.

This weekend I saw Sjogren's Syndrome spelled like this: Sourjons, Soujgrens,Sjorgen's and Sojourns, all by different people who suspected this was a diagnosis that they would be adding to their other autoimmune disease(s). You can only imagine how difficult their searches for accurate information are going to be.

The upcoming National Sjogren's Conference should be a great way for both patients and health care professionals to learn more reliable facts. All you need to do is register and come to the Delta Chelsea in Mississauga on May 3. Health care professionals who attend are eligible for continuing education credits.

I am planning to take notes and post what I learn as I have in the past. This conference has a distinctive special feature. For one hour the speakers and other volunteer heath care professionals from Sjogren's related fields will host round table talks where attendees have a chance to ask personally relevant questions.  It's great to have that opportunity and also interesting to hear about the problems others face.

Here's a quick overview of the speakers and their topics.

Dr Arthur Bookman, the co-ordinator of the Multidisciplinary Sjogren's Clinic at Toronto Western Hospital and co-chair of the Sjogren's Canada Medical Advisory Board will start the program with "An Overview of Sjogren's Syndrome."

The talk on "Brain Fog in Sjogren's" by Dr. Sherise Ali, Neuropsychiatrst, is sure to get a good reception. This is a subtle complication that some doctors don't really believe in. The role of medical treatment is limited so for patients any ideas for taking control will be welcome. 

Dr. Cindy Marek's presentation is titled "Strategies For Oral Health and Comfort in Sjogren's Syndrome." For those of us struggling with this symptom new strategies and an understanding of  the causes will be welcome. Her field is dental pharmacotherapy. 

Dr. Rookaya Mather will discuss "Tear Film Dysfunction in Sjogren's Syndrome." She manages patients with complex ocular surface problems.

Dr. Ann Parke is a rheumatologist who studied in the UK and Canada before she settled in the US at the University of Connecticut. She is speaking about "Current Treatment Options and New Therapies On The Horizon." As an active researcher her opinions are always informed and welcome. She is the co-chair of the Sjogren's Canada Medical Advisory Board, as well as serving on the International Sjogren's Syndrome Advisory Committee. 

"Oral Manifestations of Sjogren’s Syndrome". Dr. Mahvash Navazesh, DMD, Dentist will raise awareness about the role of saliva in health and disease and will focus on the common oral complications associated with salivary gland hypo-function in patients with Sjogrens

Dr Raed Alhusayen "Sjogren's Syndrome and the Skin." His areas of interest are autoimmune skin diseases and skin lymphoma.

Dryness of the mucous membranes is a hallmark of Sjogren's Syndrome

This is the 8th Annual Conference.  You can register at the Sjogren's Society of Canada website

Notes for Health Care Professionals:
Physicians will earn 7.25 Continuing Medical Education Credits approved by the Canadian Rheumatology Association (CRA) and the Royal College of Physicians and Surgeons.

The SjÓ§gren's conference this year will allow your healthcare professionals to receive accreditation if they attend. Optometrist, Dentist, Hygienist, and health care professionals can receive CE credits for attending the Saturday Conference.

Friday, 11 April 2014

Design in Health

Thinking about design as it relates to health, the skeleton strikes me as a template. It may not be an elegant example of design but we do know that it works and over the short term it can adjust to changes. Even more amazing in the long term it can evolve.

This one is done evolving but still very useful to many

It doesn’t look elegant, it's got too many fiddly bits and weak spots but it is functional and effective. Those two features are essential parts of design.

If we had to construct something else to replace our skeletons it would not look like the replica above. 

With our bones as framework we can influence the way we look to others. With such a solid base lying below our skin and muscles we have many choices about the way present ourselves.

That's one of the difficulties of chronic illness. It takes away some of the possibilities that we may want with great intensity. In my quest for a less stressful life I have (mostly) adapted to the losses. Acceptance has helped me to cope.

I'd bet no one is surprised that there is a study about this very topic.

The process of acceptance among rheumatoid arthritis patients in Switzerland: A qualitative study. The conclusions can apply to other chronic illness but I picked RA for sentimental reasons.

This post is in response to the #MedX assignment on Designing For 
Health, though it meanders away from the topic.

Tuesday, 1 April 2014

Why Is My Silo Two Miles Away?

Today I watched a youtube video of the Institute of Health Services and Policy Research (IHSPR) Policy Rounds - Improving Care of Multiple Chronic Conditions The webinar is from March 26, 2014. I found out that in Ontario chronic disease accounted for at least 65% of direct health care costs in 2010/11 and it would not surprise me if that number is typical across Canada. In the US that percentage might not be the same since the health care system is different.

The Steering Committee that set direction for this discussion was composed of government and researchers who chose stakeholders to participate in the discussion about issues and challenges involved in dealing with patients with multiple chronic conditions. They were picked because they could bring unique views and experiences to bear on the challenge and they could champion actions to address the problem creatively within their constituencies. (Michael Wilson, PhD)

The part that really caught my attention was the breakdown of participants involved in the stakeholder dialogue
3 Policy Makers
9 Managers
3 Providers
5 Researchers

One of the statements the participants produced stressed collaboration both within teams and also across silos with the emphasis that each silo brings unique value to the overall goal. The plan is to continue to support bottom up and person centered approaches to developing models of care and working across silos.

The patient silo is miles away

At this point I'm really wondering why the patient silo is off in this field miles away from the other silos. After all where does the money in the health system come from?  There is only one source - the taxpayers. Why are patients not considered valuable stakeholders? If we want to work across silos I think everyone needs to be considered and included.

As much as some health care professionals fear the intrusion of the engaged and educated patient, it seems that policy makers and planners are even more worried about patient inclusion in health care planning. (Apologies to the rheumatology researchers who are including patients)

Among the suggested strategies to accomplish improvement in the treatment of chronic disease is developing a patient centered approach to health care and using patient friendly language. There are now more patients eager to be engaged in their own care; that will help. One of the tools to deal with multiple chronic diseases will be self management. "Using innovative, collaborative approaches to developing and supporting use of self-management tools and resources" as well as including older adults and those with chronic health conditions in random trials are other methods of making progress in this area.

It was a very useful webinar that made perfect sense. But again we don't see patients included in policy and planning. I feel that this problem is perfectly illustrated by ePatient Dave's rallying cry "Nothing about us without us."

With patients seen as the lowest level in healthcare it sounds as though we are perfectly positioned for the new bottom-up strategy.