Dealing with Chronic Disease Can Get Old

This post is partly crowd-sourced from my online support group that's been together through thick and thin, even losing a few members from complications as we have talked over the years. Speaking for myself, writing this blog and choosing the pictures my old friends shared in the past made me feel decidedly better today.

Here's what they say:

Tricks seem to imply that you are fooling yourself or your body, and I just don't see that as a working strategy. With the brain in charge - it's a losing battle. So, the tips are better then the tricks.

I think eating ice cream would be appropriate.

We look like we are feeding monkeys when we go to the store because we buy so much fresh fruit and vegetables.  We have at last one serving of a fruit or vegetable and usually more with every meal.

Aging –you’re not old - I have read that 65 to 75 is "Young" old, 75 to 85 is "Old" and 85 plus years is "Very" old.

The above comments are from Dolly's mom.

We're not rewarding to our doctors.  When we start to have rheumatoid disease longer and things start to pile up....there isn't much that can be done. One of the reasons I haven't gone to another rheumy is that 30 plus years with r/a is a long time.  It’s all progressive.

I feel invisible a lot of the time.  I think you don’t get much attention if you're solo.

From Henry's foster mom

Some of us are getting a little tired. How many rounds is this fight? I am so tired of fighting for things now. I really feel like just giving in.

From our member in New Jersey

Not every patient is interested in their health care. I think more should be available to educate people on the necessity of taking responsibility for their own health. "No one cares more about your health than you do" is what I would tell them.

So on one hand you have the world where the doctor is seen as "God" and all knowing, and on the other, many people who have a variety of expectations of their doctor, including wanting to be part of the treatment process.

Then there is the minority who want to be really involved including having a voice in decisions that affect the health care system, and the policies that govern it. 

Even though some see them as "Not the unheard voices" they are still essential to pave the way for more patients and caregivers to take on a larger role. 

So I'd like to thank all the people who go above and beyond their expected roles, for doing the sometimes exhilarating and often thankless job of being patient and caregiver advisors.

To all the ants toiling away in models of collaboration

This blog is part of  RD Blog Week. See more here.

A Dfferent Route To a New Treatment

My road to a biologic drug was different than most I think. Building on my experience as an active patient who often searched for information online, I found an educational resource for doctors online years ago. They are also called CMEs which stands for Continuing Medical Education and have changed in format now.

Though they are meant for doctors, anyone could participate and the format was great. After every few pages there was a quiz, so I could check that I was absorbing the information.

That was the way I learned about the results of the Premier Trial and others that were similar. The conclusions that stuck with me, were those that said anti-TNF drugs improved disease activity and physical function.  What appealed to me most was that biologic drugs were said to give an increased sense of well-being, better physical function, and to decrease erosions and joint damage. I had already seen what joint damage could do and knew I wanted as little as possible. 

After reading these conclusions it seemed to me that my life could be better with more aggressive treatment. With physical symptoms of fatigue and inability to expend energy my life was limited. After working all day I had no energy left for any other aspects of life and I spent my weekends resting and visiting sick relatives. I felt like a doll lying in a room in a dollhouse when there were no kids at home.

Well-being is not something that my doctor ever asked about in his surveys that included the Rapid 5 ( a quick way for doctors to judge disease activity) and HRQL (Health Related Quality of Life)  measurements. Fatigue was not part of them.

Now we see Patient Related Outcomes (the results patients think are important) becoming far more important in treatment decisions and clinical trials for chronic diseases like rheumatoid arthritis. This change is recent and similar to 'treat to target' which is another phrase you may have seen online, far more than in doctor's offices.

I was convinced, but next I had to convince my doctor to take another look at my health. In my experience if you show up looking presentable and a bit perky at the Dr's office they think you are doing fine. Getting that re-assessment is difficult if you seem to be coping adequately. As my first GP (who missed my diagnosis) used to day "If it's not broke, don't fix it."

It took a few appointments to do this, which in RA terms translates to more than a year.  I had to "fail" on another DMARD so that the insurance company would be satisfied. If the new DMARD had worked it would have been great but it didn't. 

Now I am on a biologic. With it I have more tolerance for exercise and I can do more in a normal day. It did give me a better sense of well-being so I am happier and I think I am healthier too.

For an interesting read have a look at this paper that discusses the qualitative or narrative responses that show the outlook of patients - that is the experiences, attitudes and expectations of people like us about the information they receive before they start anti-TNF therapy

I really liked the paper - it sounded like me

This post is part of RA Blog Week. For more on this topic click here

Same Song, Second Verse - An Active vs Reactive Patient

At first when I was diagnosed with rheumatoid arthritis I knew nothing about it beyond what I heard from my (busy) doctor and what I read in a Chatelaine magazine article one year.

Learning how to find reliable information about my own health was complicated by having to google many of the terms I found. At first I thought that I might have a lot of the complications I read about - that was the way I learned what the doctors call "watchful waiting". After a few months with no changes it became obvious what I did not have to worry about. 

This access to the internet has meant we can all find information of any kind, from basic up to scholar or specialist level. This easy availability of information has leveled the field and is changing our traditional ideas of authority.  

Doctors are no longer the only source of facts and ideas about health. Now more patients than ever are comfortable asking informed questions at their appointments, where previously they might have been outside the exam room door before they had a chance to ask their doctor important questions.

The revolving door of healthcare

The individual empowerment that results from knowledge has changed my life in a good way. At the onset, when I was diagnosed I did not do much to help myself for and this lasted about 15 years. I was depressed and anxious and found it hard to deal with the life changes I was forced to accept.

It was encouragement from a physiotherapist and a doctor that started me off on a more active track and now I blog and am active on Twitter. All of those years of experience living with RA had left me with valuable information about how to deal with issues like finding a good team, the benefits of social support, orthotics, physiotherapy…it’s a long list. I wanted to share what I knew so I started to blog about chronic disease. But you can’t just blog – you need readers so I started to tweet links to research studies about Rheumatoid Arthritis (RA) that I thought were important.

As I met more people online I started to see opportunities to attend conferences and webinars and I realized that my opinions – that the opinions of patients - have a lot of value in healthcare. Knowing this made me feel empowered and engaged. Attending Medicine X was a huge boost because I found I was not an oddball, just a certain type of a health nerd. 

Now I am on the boards of some patient groups and a member of a variety of committees, from the Community Advisory Committee of my local hospital, to government bodies and also research teams. Even though I loved my previous job, this is even more rewarding.

Being involved with working for changes in the health care system has turned into a real and meaningful passion.  It is great to have the tools to make a difference and to encourage others to get involved.

I loved this acronym I found about learning. SML stands for “self-managed learning”– you can choose your preferred way to learn from a variety of resources like video, webinars, articles and scientific papers. We can all choose to learn at our own speed and level, and patients who learn more often do better in the long term in many ways. 

One that is important is social support. Patient experts and patient groups are good sources of knowledge.

Patient Support Group

This blog is part of RA Week. To see more blogs on this topic click here

Using Orthotics in Rheumatoid Arthritis

In case you wonder what orthotics or orthoses are, here's a picture of the side view of one of my insoles beside a foot (not mine). With the side view you can see the layers that provide the support and cushioning.

Using insoles that are custom made for my feet has meant less pain, and keeps me from limping most of the time.

This week I read an abstract about a clinical trial done in the UK. It was called "Clinical effectiveness and cost-effectiveness of foot orthoses for people with established rheumatoid arthritis: an exploratory clinical trial". Though I looked for the full paper I could not gain access to it prior to writing this. I have since read the full paper. It makes my conclusions less clear cut.

The conclusion of this trial is that even though "semi-rigid customized foot orthoses can improve pain and disability scores in comparison to simple insoles" that providing them is not worth the money on a Quality Adjusted Life Year (QALY) basis. 

Fake money for false savings (IMO)

They conclude this despite the fact that people with rheumatoid arthritis (RA) have "greater difficulty with activities of daily living, increased fear of falling and greater self-reported foot impairment." 1

The pain and disability experienced by people with rheumatoid arthritis who have involvement of their weight bearing joints will frequently lead to damage to the ankles, knees or hips due to poor gait mechanics. 

It is estimated that one in three adults with RA will fall once or more times per year (Stanmore et al, 2013) with younger adults falling as often as older adults. Additionally 68% of people in the UK who have RA are reported to be physically inactive. In fact I have wondered for years why anyone thinks that a "Walk" is a good way to raise funds for RA.

People who have pain and disability when they walk are less able to remain in the workforce, accomplish normal chores and errands and often experience social isolation.

As a person who has been using customized orthotic insoles for over 32 years I would like to say that my experience of these insoles includes 1,664 weeks of use which is 350% more hours than the whole clinical trial in total which included 41 (only 29 completed the study) people for a term of 16 weeks. (464 actual person weeks of usage). 

I realize that the experience of one person is not research - it is qualitative and experiential, and yet the sheer length of time people with RA must live with this pain and disability should not be so easily disregarded. My 1664 weeks provides a perspective on the length of the trial.

Through the use of custom made orthotic insoles I have been able to delay most of the surgeries I have needed for up to twenty years. I would maintain that a 16 week trial is far too short to come  to conclusions about long term efficacy, and that this trial has limited exposure to experiential evidence, based on the short duration and small sample size.

Increased surgery and the future need for custom-made footwear might quickly erode the short term savings that would seem to benefit the healthcare system, while leaving patients with more pain and increased disability.

There is no sign that patients were involved in this trial in any way beyond being subjects. I would like to see some patient involvement in the outcomes that are to be measured in future research.

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.

Kidney Week and RA

This blog starts with a patient story, just the way we are told that many hospital and heathcare meetings begin.

Julie has rheumatoid arthritis (RA) and knows about CKD (Chronic Kidney Disease) from experience.

"There are different levels of CKD depending on how well the kidneys work.  My Kidney disease is at Stage 2.  My kidneys work at 42% of what might be considered normal.  Most people's kidneys don't work as well when they age, but mine are worse.  

From etsy shop YourOrganGrinder. Buy yourself a kidney

I actually have no symptoms.  People don't usually have symptoms until the numbers get much lower.  I do have to keep my blood pressure under control and can not take several medications - like NSAID'S, Tylenol, biologics, etc.  The Vicodin that I take has a small amount of Tylenol, but my doctor said that was all right.  He sees many patients who have kidney problems from the NSAID'S - they have taken too many.  

A man who John worked with was taking Advil like candy for his osteoarthritis and went into kidney failure.  He had to go on dialysis for a period of time until they were able to get his kidneys working again.

My problems all started with a medication that I took - Vioxx  (a cox-2 NSAID).  It put me in to kidney dysfunction 6 weeks after I started it.  Vioxx is now off the market because mainly because it was affecting the Hearts of people that took it.  But - it affected my kidneys.  

After stopping the Vioxx, my kidneys returned to close to normal but apparently more kidney problems showed up later - you know how the inflammation of Rheumatoid Arthritis likes to attack internal organs.  My Internist sent me to a Nephrologist (Kidney doctor) and he has been checking my kidney levels ever since.  I have extensive renal tests every year.  So far, I have remained at a stable number."

I have had a draft of this story from Julie for a few months now but today seemed to be the perfect time to post it.

This morning the #HealthXPh tweet chat, run by doctors in the Philippines was about dialysis. You can see the blog here. This treatment for CKD is hard for anyone, with 3 dialysis sessions a week being ideal. Imagine how much more of a burden it is in a country where personal income is much lower.

A few hours after HealthXPh I saw Bernadette Keefe's (@nxtstop1 on Twitter) storify of events leading up to next week's nephrology conference celebrating Kidney Week November 3rd to 8th. 

If you're on Twitter the hashtag for the conference is #kidneywk. There are scary stories about kidneys out there - one is the urban legend about waking up in a bathtub of ice with your kidneys stolen. Kidneys are small but necessary.

Five Tips For Dealing With Chronic Disease

1. RA helped me to develop a sense of optimism

When my health changed for the worse I became depressed about pain and fatigue, and was even more stressed and unhappy when I got a diagnosis of Rheumatoid Arthritis (RA).  I remember clearly that it was summer, and I was told to stay out of the sun because of my medication.

For some reason, my mind went back to my mother - she used to enter contests at one point when we were kids. I thought I'd try this home made solution! I started to enter and once I got started it was great to be looking forward to exciting calls, messages and letters. Gradually that positive feeling occurred more often.

I wish I could uncover the secret of being this happy

2. You need to be able to find things out and put things together.

When you suddenly find yourself with a health problem you have barely heard of, it is worth learning at least the basics about the illness and treatments. In the case of RA the process of getting effective care was too slow for me. If I had known more about the medications I would not have had to weigh the options and start a new treatment months later when I saw the doctor again. Being ready would have helped me to feel better sooner. Knowledge affects your outcomes.

Picture taken at Paul B. Helliwell Patient & Family Library at Toronto Western Hospital. You need to have your organs together

3. You need help

Hopefully not this level of help

Your primary care doctor is the person you see most often. Do the best you can to find someone who will work with you. With a chronic disease you can learn a lot and get help from other types of health professionals too.

With RA I really value the help of the rest of the team I have put together over the years - an Orthotist to make the orthotics that keep me from limping, an Occupational Therapist to tell me how to save my joints and find devices and ways to make life easier and a Physiotherapist to oversee the physical areas that the rheumatologist never seems to mention.  In fact my physio cheered me on for years as I struggled with disatisfaction. It really helps when someone keeps saying "You're doing great."

4. You have to be persistent to get good treatment

I always hope for a great treatment that will work fast - like a bolt of lightning

Good treatment is not likely to find you. You have to search it out. If your first  doctor is wonderful, fine, but RA lasts a lifetime, so it's best to find a specialist you can trust, and also one who has up-to-date knowledge of treatments. Even if you want more conservative treatment at least the best doctors know which of the milder drugs are most likely to improve your health.

An example of persistence. My Doctor has to fill out this many forms to get people on a biologic drug.

5. You need support

They are holding each other up

Your family and friends (some of them anyway) will be good sources of help and support for you during your ups and downs with RA, but I'd say there's no substitute for a support group. At first I was unable to find an in-person group; now I have discovered one through volunteering for arthritis related causes.

My support group of choice is online. I've been in the same one for 15 years and we have grown very close. When you're worried and don't want to make your friends and family even more anxious the best people to talk to are others who have been through it before. They are invaluable to help you get through tough times.

On Twitter you can find people with RA using #rheum as a hashtag, or you can go beyond just talking to others who match your illness and try to make help others and change things that are wrong or less than perfect in health care. Helping others is one of the best ways for people with chronic disease to start going beyond their illness. Do you know the real secret of the self management courses you see?  It's in just deciding to take it - that's a first step.

Once you join they teach you how to set goals that will work for you. Even if you decide not to set a goal some weeks it still does you good because you are deciding what you want to do, not your disease. So there is my theory of self-management!

A Day In The Life. RA Support Group Edition Day 1

I crowd sourced some of my day in the life. Support groups are wonderful.

Polly has ideas  for a demo film:

"Someone needs to make the virtual reality rheumatoid arthritis experience - I've been wanting to do that for years.  A day in the life..from the lowest pain to highest and then add some gastro issues just for a few chuckles.."

Jill feels that her doctor does not appreciate the impact of RA: 

"I don’t think our doctors have any idea of the impact on our quality of life. We see them for such a short amount of time throughout the year and then it’s only enough time to deal with the immediate issues/concerns. I bet if we each sat down with our rheumy and talked them through a week of our lives they’d soon see things in a different light." 

Julie and John:

"We look like we are feeding monkeys when we go to the store because we buy so much fresh fruit and vegetables.  We have at least one serving of a fruit or vegetable and usually more with every meal.  I really don't think we surpass seven servings a day though.

I have read that 65 to 75 is "Young" old,  75 to 85 is "Old" and 85 plus years is "Very" old."

Polly is single now:

"I feel invisible a lot of the time.  I think you don’t get much attention if you're solo."

Rosie wants a place to relax.

"Sometimes I sat in the pavilion and knitted.  I haven't found a body of water to visit but I am going to try and find one so there will be a place I can go by myself where I don't have to worry about catching anything from anyone!"

Julie has a soft spot for animals

"We were feeding a awful-looking very young raccoon that we felt sorry for.  He looked so sickly and after several days fell over in the yard.  John picked him up in a towel and put him in a box and then called animal control.  They came out and took the poor little raccoon and the officer told us that distemper was rampant in raccoon's in the area.  We both shed a tear over that sick raccoon. Thankfully, our pets are vaccinated against distemper, but the feral cats we feed aren't vaccinated against anything and now we are worried about them.  Always something to worry about."

I don't have a soft spot for all animals

At our house we are fighting the groundhog wars. The hole is blocked off now. We might have left him alone but he wanted to live right near the back door, next to the foundation.

Just sitting here I see reminders of RA in front of me, on my desktop, splints in the nightstand.

Pills under the monitor

Jills ring splints picture on my desktop

Adapted pens always near me

Resting splint worn nightly

Right angled knife - so easy for chopping

We Need More RA Research!

In 2010 I saw Dr. EC Keystone give a talk on advances in the treatment of RA. It was called "The Most Exciting Time in the History of Rheumatoid Arthritis" and I blogged about it here. I'm still absolutely convinced that things are much better than in the early 1980's when I was diagnosed - we have many new drugs to choose from that are much more effective than the drugs of the past, but I'm not convinced it's enough anymore.

Lately I have been finding research papers that make this wonderful progress look less impressive. For one thing it is disturbing when Low Disease Activity is equated to remission in the decision of whether to reduce or discontinue treatment. In how many other diseases is treatment stopped or tapered when there is still evidence of activity?

This is the way I look at the issue. I have 20 joints in my hands that are checked by my rheumatologist during each visit. He uses the DAS 28 scale to judge disease activity. One finger joint has fused during treatment with anti-TNF drugs and four more of them show moderate activity now. That could result in very poor hand function in the future because 25% of my finger joints might end up mostly unusable. This is not enough reason for a change of treatment. It is considered low disease activity despite the possible results. The reason I do not count my wrists in this equation is that they are fused and no longer function as joints since no movement can occur. 

"We don't see hands like this anymore" Recent quote from rheumatologist

Here is another study that monitors functional capacity of patients over a period of three years and concludes that those who require surgery have worse ability to function. More timely access might help, but for many of us this needed surgery is considered elective and we wait; For others it is not affordable.

This study and the one after it really led me to tackle the topic of lifespan:
Patients with rheumatoid arthritis have better functional and working ability but poorer general health and higher comorbidity rates today than in the late 1990s. This study concludes that the advances in treatment and the attention given in the "treat to target" strategy have been successful with rheumatoid disease activity outcomes. "However the result was just the opposite with regard to overall health and co-morbidities". While the lifespan in the general public has increased, this has not been the case with RA patients.  This makes me agree with the authors that there are still challenges in the treatment of rheumatoid arthritis.

The icing on my non-celebratory cake
Influence of Radiographic Joint Damage in Mortality Risk in a Cohort of Rheumatoid Arthritis Patients: A 20 Years Survival Study
"This mortality gap has increased in the last years since mortality rates for RA have remained constant throughout time while mortality rates for the general population have declined."

These two studies taken from abstracts of the American College of Rheumatology meeting this year agree that while treatment and symptoms have improved the bottom line hasn't budged. Our lives are shortened in the same way as in the past. Biologics have been in use long enough that we should be able to detect an improvement in mortality rates. This is not the case. Of course it doesn't change the lives of any of us on this course, but it does give us a darn good reason to advocate for more research, ideally into why the bottom line isn't budging.

Coping Through Adapting: Not Quite the Same as Doing Well

A few years ago my rheumatologist used a computerized patient reporting system on a trial basis. Patients were asked to fill in a detailed questionnaire at home the day before their appointment. I'm sure it was useful for the doctor to see a graph of people's progress over a period of years. I was very enthusiastic to see my chart take shape as time went on and to be able to track the changes in my reported health. The link to the chart is similar to the one I used but not the same.

It took a while for me to notice how little change there was in some areas. With rheumatoid arthritis (RA) I could see changes in pain, sore and swollen joints, and activity levels of  RA. What didn't change was the global assessment and I came to realize that it would take an amazingly good or a shatteringly bad result to change that marker at all.

Known as a homunculus. RA version. Hands and feet exaggerated because of numbers of joints affected

The other area that did not seem sensitive was the health related quality of life (QOL or HRQOL). Over my whole time in this reporting system there was no significant change. Minor variations may have been connected with how literally I read the questions.

There were 25 statements to determine QOL which were rated on this scale:
Sample question. I can do chores such as vacuuming and yardwork...
Without any difficulty
With some difficulty
With much difficulty
Unable to do
Not Applicable

There are many things that you can do more easily by adapting your activities, products or the methods that you use to do things.

Some examples of this:
Opening car doors - Just shop for a car that has doors you can open.
Turning faucets off and on - Buy a lever-style tap
Cut your meat - Use a sharp or right angled knife
Lift a full glass or cup to your mouth - get lightweight or plastic glasses and cups
Open a new milk carton - Stop buying milk in cartons
Dress yourself including laces and buttons - Fewer buttons, ditch the Spanx, stop wearing tight pants where you have to force the zipper up and the button fights you, try velcro-closing shoes.

I'm sure you see where this is going. By making a myriad of changes in your life and habits, it looks as though you are maintaining you QOL. In a sense you are maintaining it because change is not the same as loss, but these changes make you feel that control of your life is going to the disease. None of the lifestyle alterations feel positive when you have no choice but to adapt.

Using a working splint helps me to cope with typing for a long time

So on the chart your condition looks stable, but in truth you are changing your habits in so many ways and your life is so affected by RA that you barely recognize it anymore. I say the measurement process is flawed.

Another item missing from this system was a measure of fatigue, which is very common in autoimmune diseases. It makes you wonder about the extent of patient input into these patient reported outcomes. Who is better than a patient to describe the outcomes and issues they deal with daily?

One article I found very interesting was titled Patient participation in psoriasis and psoriatic arthritis outcome research
by Maarten de Wit et al. Prior to the 2013 GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) annual meeting a literature review was done to confirm levels of patient involvement in previous outcome level development. They found 63 articles related to 26 outcome measures and only one described any patient involvement in determining outcome measures. This 2013 meeting was the first time there was an official patient presence at the meeting and it was described as "an important first step into incorporating their voice into GRAPPA's research agenda".

Amazing what literature reviews can tell you. I'll be looking for more, since it is hard to believe that psoriatic arthritis is the only disease area where the patient voice is missing in something as basic as outcome measures.

There's another post on this topic Dropping the Ball on Patient Outcomes?