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.