Dropping the Ball on Outcomes?

It seems that sudden dramatic changes in chronic illness, which make it resemble acute illness, get a lot more intensive attention from doctors and the health care system. The gradual long slow loss of parts of our lives and abilities is barely captured, partly because of our skills at adapting. This timeline means those of us with a smoldering illness that just won't quit have to adapt and change dramatically over the years and yet our illness looks less visible than ever.

Living the good life

The regular health related 'quality of life' scales do not measure ability well. For example if you are asked a question about walking up a flight of stairs, you're not asked whether or not you could do it again; or if you run an errand how long does it take you to recover?

The consequences of activity aren't looked at. Many tasks in life are essential, and hard to prioritize. Adrenaline and pain killers can help you accomplish them, but what about the recovery period? If it takes two full days or a week of rest to recover from an activity that's a major consequence and severely limits your life.

I get so annoyed when people say that patients should get up early, take a warm shower and do some light exercises to cope with fatigue. They assume that's all it takes.

Another annoying fact of life if you have rheumatoid arthritis (RA) is that when Drs. are measuring the impact of RA on your life they don't count the joints in the feet. (DAS28 score)  There are many foot joints and they can all affect your life in excruciating ways. The small joints of the hands and feet are most commonly affected first in RA, so why leave half of them out?

Might plastic or 3D printed feet be better for me?

Also I wonder about health goals? I really think doctors and long term patients ought to discuss health goals: not just people newly diagnosed. If my specialist doctor thinks it's good enough to keep me "on the road" and I think we are aiming for a better result then that's a major misalignment in the way we view my personal outcomes. The patient and doctor need to collaborate. Yet, even in Canada, doctors need to be mindful of costs and insurance issues that limit choice.

When we start to talk about comorbidities (illnesses related to your main diagnosis) our GP doctors are too busy. They want to deal with one problem at a time, and yet how can any health issue be separated from a serious chronic disease? 

With such a shortage of rheumatologists there is pressure on them to see as many people as they can, and to stick to treating RA, not complications. 

Patients don't always know what other health issues related to RA they should look out for. If I were a less educated patient, why would I even think of asking a rheumatologist about dry eyes and dry mouth? And yet they are the doctors who usually treat Sjogren's Syndrome which is common in RA.

I see these as some of the gaps in treatment faced by those with long term illness that is unlikely to kill us. It's chronic, and our whole care system is based on treating acute illness.

This post is a continuation of Patient Reported Outcomes.

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?