at the Water's Edge

Living life and learning all I can along the way!

A Twist on Patient Reported Outcomes

Many rheumatologists have seen the benefits in measuring patient reported outcomes, rather than only relying on visible symptoms and blood tests to show disease activity and treatment efficacy (although, judging from other patients I’ve heard from, perhaps not *enough* doctors…).  Patients definitely see the benefit in this as we know that we know better than anyone else how rheumatoid disease affects our daily lives.  (Read more on the value of patient reported outcomes from RA Warrior)  To measure the effect of rheumatoid arthritis from a patient’s perspective, many doctors use what is called a Health Assessment Questionnaire (HAQ) or some other type of patient survey.  
My own rheumatology office instituted a questionnaire a few years back, and I’ve found it to be extremely useful as it helps to communicate a wide range of symptoms and the effects of those symptoms to my doctor.  The questions include a rating of pain, specifying affected joints, and rating your ability to perform daily tasks such as sitting up straight from a chair or standing in line for 10 minutes.  While these questions are helpful, I’ve realized over the past few weeks, that when I’m judging my own disease activity and trying to evaluate my symptoms, it’s beneficial to get a little more personal.

If you don’t know, back in December I switched from Enbrel to Humira to treat my rheumatoid disease.  You can view my progress here, and read how I’ve struggled a bit to evaluate exactly how I’m doing, not really knowing if I was improving or simply getting used to symptoms.  I’ve legitimately felt pretty well since the end of February, but I still wanted some way to measure my improvement.  I hate the 1-10 “Rate Your Pain” scale, as I’ve indicated in the past, so that’s out.  I needed something else.  Then it dawned on me the other day after I went grocery shopping.  I pulled into the garage and had just five or six plastic bags of groceries in the trunk.  I grabbed them all at once, carried them inside and swung them up onto the kitchen counter.  That’s when I realized: I couldn’t have done that a couple months ago.  I made some joke on Twitter about measuring my disease activity by how many groceries I can carry in at once, but I think there’s some seriousness to that, too.

I went on to think of the quirky little things that I do, and thought about how easy or difficult it’s been for me to perform those tasks over the past few months.  By personalizing my list of tasks to evaluate, I think I can get a much better read on how I’m doing.  For example, I’m not having problems with my knees right now, so questions about standing up, walking, etc. aren’t so applicable.  So, what is applicable for me?  Mostly tasks that involve my wrists, as that’s been my main problem area as of late.  Here’s a list of a few other things I came up with that have been good indicators of my condition:

- How easily can I make a homemade pizza crust?  Can I knead the dough and roll it out myself?  Do I need to use my forearms because my wrists can’t handle it? (I have been known to do this...)
- How long can I dig in the garden: planting, weeding, or otherwise?  Can I lift that giant bag of mulch?
- Can I sleep through the night without my wrist waking me up?
- How easily can I lift a stack of text books? (For the record, it was way easier putting my library back together this past weekend than it was taking it all apart when we re-did our guest bedroom a couple months ago)
- Can I effectively use the pepper grinder at work?  The giant one that takes effort from my entire hand to turn?
- Can I pick up a case of juice from the ground?  Can I carry it for more than five steps? (I work for a juice manufacturer…so this is a fairly regular occurrence!  A case of juice weighs 40 pounds – though I never had problems lifting a case until a few months ago)
- Can I lug all of my bible study materials out of my car from the driver’s side, or do I have to go around to the passenger door to carefully collect all my stuff? (between my large purse and my tote bag with my bible and giant binder, plus anything else I might be bringing that week, it can be a challenge lately!)


By looking at these types of things, I can honestly say that my wrists are doing far better than they were before I started Humira, and far better than they were during the first couple months of Humira.  I kneaded a ton of dough last night without any problems – and without having to enlist the aid of my forearms!  I grabbed a case of juice last week and while I was slightly afraid of dropping it, I managed far better than I have been lately.  Oh, and my wrists don’t wake me up at night anymore – at all.  That’s been huge!

These are just a few examples from my daily life that pertain to my problem areas.  What types of tasks or activities would be on your list?

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Hi there! My name is Dana and I live in West Michigan with my husband, Tom and our dog Copernicus. I created this space as a place to share the things I learn along this journey I call life. I work in marketing and I'm a sort of Jane of All Trades, interested in all things nature, gardening, cooking, exploring and learning new things. This blog is a conglomeration of my interests, hobbies, life and life lessons. Thanks for stopping by!