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
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?