The Value of Patient Reported Outcome Measures of Rheumatoid Arthritis
Are patient reported outcome measures useful for Rheumatoid Arthritis?
Unfortunately, pain is invisible. I’ve fantasized that it should have a color so that it could be seen and measured objectively. However, pain is just as invisible as stiffness, weakness, and fatigue – the major symptoms of Rheumatoid Arthritis. How can we measure Rheumatoid Arthritis since its principal symptoms are only discernible by patients?
Last month, we considered one cancer researcher’s suggestion that drug trials ought to use patient-reported outcome measures for side effects instead of only physician interpretations. Dr. Basch found patients’ reports significantly differed from clinicians’ reports. What about patient reports of Rheumatoid Arthritis symptoms in a clinical setting? Would they also prove useful?
Some rheumatologists do find value in patient-reported outcome measures of disease activity with RA. Dr. Ted Pincus has published several articles with other doctors which discuss the value of using patient reported measures. Pincus has demonstrated that patient reports of Rheumatoid Arthritis disease activity can be as useful as more time consuming (costly) measures.
In 2008, Pincus noted that in two clinical trials of abatacept (Orencia), the RAPID3 index proved to be comparable to other indices of clinical status of RA patients. RAPID3, a simple patient report of pain, physical function, and global assessment of disease activity, provided statistically similar results to the disease activity score 28 (DAS28). Pincus wrote: “There is no intention to suggest that RAPID3 should be used in lieu of ACR or DAS indices and improvement criteria in clinical trials and clinical research. Nonetheless, the finding that RAPID3 is correlated with DAS in clinical trials and clinical settings and has capacity to distinguish active from control treatments in clinical trials, suggests that RAPID3 may be adequate for clinical care. An index of only patient measures such as RAPID3 appears preferable to the absence of any quantitative data other than laboratory tests in the management of RA in routine care, which is the current situation at most of the visits of RA patients to a rheumatologist.”
Embracing patient-reported outcome measures in daily practice
I’m happy to report that Pincus is not the only doctor who sees value in patient self measurement for Rheumatoid Arthritis and that saving time is not the only reason to use it. Dr. Till Uhlig wrote a Keep It Simple, Stupid article called “KISS” — Embracing Routine Patient Assessment. He wrote: “As patients and physicians attribute different concepts to disease activity, their domains should probably be examined separately. The patient perspective in rheumatic diseases is important, pain being the most important reason for the patient to seek the rheumatologist and the most important area for improvement. Thus, indices of disease activity representing the patient perspective in RA must have a key role when we assess RA and evaluate treatment effects in daily practice.”
Personal comment on patient-reported outcome measures
In a conversation with my daughter, I recently compared the invisible symptoms of RA to her deafness. For centuries, hearing impaired people were called “dumb.” There was an assumption that deaf people must have a mind or brain problem since there was nothing visibly wrong with their ears. These days we have CAT scans that can show everyone my daughter’s partially formed cochlea. She has never been called dumb.
Someday, the mechanisms of Rheumatoid Arthritis will be understood and there will be ways to more objectively measure the invisible symptoms of RA. Until then, we ought to ask patients about their symptoms and treat the data as reliable. Most patients are reliable as much as most doctors are and most lawyers are. Honestly, medical care is practically useless without patient input. I can think of countless other “invisible” ailments that people – even doctors – are treated for every day. Examples include everything from migraines to urinary tract infections to plantar fasciitis.
Recommended reading:
- Would Relying on Patient Generated Data Make a Difference?
- Does Rheumatoid Arthritis Pain Really Hurt That Much?
- Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?
- How Much Does Patient Testimony Matter?
It would be nice if more doctor’s considered patient assessment of pain relevant and not use it as ammunition to call our pain hypochondria or some other syndrome. Imagine if more doctors respected our assessments. This would have a huge positive impact on patients in many ways. Good point on migraines. Nobody has ever made me prove one with lab tests to get respect and treatment. There are many flaws in evidence based medicine. We don’t have the technology to show evidence for every ailment. Patient assessment therefore is critical.
And I’m assuming a doctor with a migraine (or other pain with an invisible cause) would expect to be treated at face value. It is RA that is treated differently – I’m learning that there is “baggage” or something with RA.
I think the baggage is that RA is painful and there is no solution yet to be painless with RA. I suppose a doctor wants to fix all patients and make them better. I’m sure they get frustrated when they can’t or are too rushed to figure it out. Is this where they deny our pain or call it something else like fibromyalgia? I wish not.
My Rheumy admitted one time that it is frustrating because they can’t “fix” the problem
I too wish that pain, swelling, stiffness and other arthritis symptoms were visible by color. Sometimes I feel stupid telling my dr about my AS pain because he cannot see it. Sometimes I wonder if he believes me that it is as bad as I say it is. It makes me afraid to tell him.
Hey, K~ How about we get some markers & do the pain chart right on our skin? 😉
That’s one of the reasons I like my Rheumy: he believes what I say about my pain, regardless of outer signs. Says he has patients with horrible deformity who claim no pain and others that have no deformity but have lots of pain.
Hi Lisa, that sounds like a good rheum dr. That is also true of lab tests and xrays. We cannot “see” RA yet.
I guess the only thing that really “shows” it are joint erosions in MRIs. I even asked the Dr if anything else could cause the erosions (I was in denial for years — but still took my meds as I am not silly) and he said no.
Hey Lisa, haha. I love the “as I am not silly” part! 😉 I’ve heard docs say that RA erosions are “distinct” – I’d like to know more about that.
What a great post. And I find it interesting what you said in your comments, Kelly, about “baggage” and RA. When I read that, I thought of all the judgements that are passed our way because our disease is invisible and autoimmune. I have encountered several people who hear autoimmune–self attacking and assume that I must be turning on myself emotionally or spiritually–which in turn has caused my body to misbehave. This makes me feel like they believe the disease is self inflicting. I’ve already been through that hoop. I’ve moved on. I had to remind myself that God knows what He’s doing and He is good all the time!
I’ve read a lot of your posts and appreciate the time and effort you put into your blog. I’ve gained momentum from your warrior spirit. : ) May God continue to bless your endeavors.
I am a newbie to the site and find comfort in knowing I am not alone in the “fight for a life with RA”. Like many of the posts I’ve read on this site my pain and discomfort was brushed off for years by my MD. I was misdiagnosed with having Osteoarthritis for over 6 years. When it reached the last possible joint in my body I was extremely discouraged – especially when I was told to exercise (which I did faithfully) and stop smoking (which was to blame for any and all of my health issues). It never occurred to me to question my MD – not until one of my girlfriends urged me to be tested to RA. That was 7 years ago! I am currently in the middle of a flare that started in November of 2009 and is still burning bright. I changed doctors (shocker) and have a have a medical dream team with my current MD and Rheumatologist. They both rely on me AND my blood work as an indicator of the stage/progression of this thing that is currently putting my life on hold. Don’t lose faith – the right doctor is out there somewhere.
Many Blessings
Mel
Hey Mel. Good advice. I don’t really understand why this happens: it seems to me that OA & RA are so different in symptoms & in actual damage that shows on images.
What was that “last possible joint”? I keep thinking I’ve found it. 😉
Lisa, there are some MRI studies showing that some normal folks can have erosions. I’m sure the percentage is small and it doesn’t answer why, but erosions are therefore not always due to RA, though in most cases I guess they are. There is also some evidence that sometimes erosions can heal, apparently due to medication. I’ve seen a few reports of this with methotrexate and some of the biologics, though I don’t know how common this is, nor what the significance may be, especially if secondary damage is already occurred. And of course there is always the methods and techniques used to be considered.
Though I don’t agree with Deepak’s theory that RA occurs in angry women who can’t vent their frustration, I don’t totally discount the thought that perhaps there is possibly some degree of emotional tension that perhaps plays some role in helping RA to start. I guess that depends on them figuring out where RA truly starts. Some reports of experimental arthritis induced in mice indicate that it may actually start in the tendons, and then spreads to the joints. This would indicate that mechanical factors may play a role. It could be a combination of the way we use our muscles and tendons. One is perhaps mechanically “too hard” on their joints. And if you add in that one might be in an “uptight” mood much of the time, well this would put the muscles/tendons in a constant “uptight” state. Add that to the actual amount of force you put on your muscles and tendons and they way you repeatedly mechanically use them (that might cause erosions mechanically as well), and well, I suppose this could set up the intial source of inflammation. Add into that genetic and environmental factors affecting physical and emotional stress, and they way they affect the body’s inflammatory and immune responses….Well, I could see this as a potential pathway through which RA might begin….Just one meandering random thought. Then again, RA might actually begin inside the bones, from bone edema. There is some evidence that bone marrow edema seen on MRI’s might help cause erosions somehow.
thank you, you express these things exactly how I attempt to, but don’t have the words. I have bi-polar d/o as well – a brain disease – so communicating the ideas that you do, isn’t so easy sometimes. When I read what you write, it’s like I find the words I’m looking for to describe how I feel, or what I’m going through. THANK YOU SO MUCH!
In RA I use: RADAI, HAQ; in AS I use BASDAI, BASFI, HAQ; in PsoA RADAI and/or BASDAI, HAQ; in FMS I use the FIQ.
Pain is something, which I can´t measure, only the patient can estimate how much pain there is – we use the 0-10 NRS.
I love this entire post and all the responses! Initially I was, for lack of a better word, happy to have a disease that had little or no visible symptoms. My brother with MS often stayed home on able days because he didn’t like to have the looks given to him. Sometimes people were afraid to ask him what was wrong, sometimes he wanted help and he knew people could see he needed help yet they didn’t ask to help him. Some times he would get upset when people asked him if he needed help, saying firmly, NO. I can do it! I welcomed the thought I could go out in public and not turn heads or receive looks of pity. For me, pity was awful. It would make me as anxious as the diagnosis itself. I wanted to be able to escape the labels put on me by visual assumptions. I didn’t have to be the opening topic when old friends ran into each other. Have you seen Rachel? or wow What’s wrong with Rachel? Or even thinking I might feel avoided because someone didn’t know what to say. I was glad others were not going to be uncomfortable or uneasy from the presence of me. I still was greeted with Oh my gosh, you look great! I would not have to mention anything different and I could be spared hearing all their related stories and remedies… take goat hooves, followed by boiled orangutan saliva etc.
A few people would know, I’d tell them and of course my medical staff would know.
I was a little defeated when I slowly realized the ‘invisible’ that I was so grateful for had become another item in the negative column. My learning so many couldn’t grasp the harm of RA, nor did I feel others found my symptoms valid.
I did still find the invisible quality a benefit, to not have it define me.
Then, one day,I sat in the chair with my nurse, fielding her questions, answering truthfully. And on a scale, one to ten, your pain? I said ten.
She looked up and said,” no, ten is bad. You don’t look that bad.”
Could this be happening? The place I truly knew I was understood. The one place I didn’t have to teach others about my RA. The place I knew I was going to learn more about RA. and at what level I reached, and what my next attack plan was going to be.
I was shattered. Not only is RA invisible. It had apparently made me unable to evaluate my own pain! I had become invisible too. I went home, but instead of staying angry, I wrote a note, addressed personally to my nurse. She wrote back, apologizing. She was not questioning my pain. She did however, wonder if I had misunderstood the number. She was really looking at me in amazement. Not is utter disbelief. I had come in said hello to everyone. Smiled at everyone. And had my list of questions on my lap when she came in the room. Surely I was feeling good. She said even the other nurses had said it’s always good to see Rachel. She always has a smile, not typical of this miserable disease. Well, believe me….It’s a lot of work to be happy. But it’s so tiring to go out in public and only see grumpy . You get what you give and I don’t want to be seen as sour, I don’t want to complain. And I want everyone to know if I am saying I am in pain, then dang it. I am! I am always in pain, I don’t find it of any value to notify you daily of this. I will tell you I am in pain, only when I need you to understand how I am hurting. I am not asking you to fix it. I am not asking you to come help me. That is all I need. For you to understand that I am in pain. Even when all outside appearances seem to defy it. I do expect more from my doctor. I expect him to know I am in pain even when all inside appearances seem to defy it. And that is exactly what I get. I don’t ever want to know where I would be without that. Surely on the quest for a different doctor. We should never have to want for a color chart or a visible pain indicator. We are not the Nielsen ratings. We are not selling anything. There is no reason to exaggerate our discomfort. I for one, am glad to announce when I am the least bit relieved of pain. We are only being truthful for honorable reasons, and should be treated honorably.
Rachel, thank you. this post helps me understand why you have been such an encouragement to me. We have much in common. As I wrote in yesterday’s blog, I think most of us really don’t want to be seen a chronic pain patients – much less be them. There is a high level of pain for me most of the time. It is never gone from most of my joints. No one in my life is willing to accept that it is true except for my children. I have had numerous doctors, nurses, and technicians tell me it is not as bad as I claim. So I am usually silent about it.
I have chosen to take this pain & to learn to listen carefully to others and try to learn from them and not make assumptions. If I can give any one person this gift of knowing they were heard or believed, I will. I might be the only person who believed them today & I know the value of it. Today, your post makes me feel understood. Thank you.
Thank you so much for this post, Rachel. You spoke to exactly how I feel on a daily basis. I try to put my best foot forward, pull myself together and be happy for what I do have, what I can do. I recognize good days and bad days I have as well as others and I try my best to honor that. Learning to adapt is the name of this new game of life with RA. I am thankful for days I can do the dishes or brush my hair. I was just on a plane and was very happy, smiling at the baby next to me. Then a couple hours into the flight my hands started throbbing and hurting so bad. I was happy, but crying because it hurt. People don’t understand what we’re going through and likely never will. Having sensitivity to the battles we are all struggling with , whether it be physical or emotional trauma is the hardest things we, as humans, have to be better at doing.
Kelley.. Awesome!!! I have been able to read posts the last week or so but unable to respond as I wasn’t feeling so well. When I finally feel well enough to write, I find myself getting so carried away! I hesitate to send my lengthy words, but I did find the send button. You can’t Imagine how thrilled I am to read your response! I am an encouragement to you? Thank you . I really thank you. You have given me power when I felt I had lost my power. You write things that make me want to respond. You write things that make me think. You write things that, even though aren’t applicable to me, I find myself getting out paper and writing thoughts I hadn’t sat long enough to allow to come. To know what your words mean to me, and to know how careful you are how soft you speak to all of us, I often, too quickly, zip off my responses. I can be short, sharp, and very sarcastic. I know it’s my nature, and in person, it’s understood. In written words, not so much! But we are all pretty fragile here. I just can’t change me now…. and this is one of the only places I feel safe to admit how much crap this RA is. Saying it hurts on your sight, doesn’t make others in my family hurt. It’s unbearable to see my kids faces when I hurt. And even harder to see my mom’s pain. You get that. Unfortunately, all of us on this site get that. We choose not to show our pain, not only because we aren’t believed, but often because we are believed. And that is why nothing is simple. And no one’s struggle is the same. And you do understand that!! We understand you! Thanks. or: thanks to the second power. or just one more expression: Thanks. Squared.
One point in this eloquent exchange between you two left me with no option but add a comment I find that doctors really need to understand. The pain scale should not even be a factor for chronic pain patients. I can handle a short burst of pain at a 10, but living with a 4 for weeks or months on end is worse than most can imagine. I told my PCP’s nurse this once and she never asked again.
Exactly Ed! How did you manage to get my point in so few words! Ha..The world is right..girls talk a lot!
Yes, Kelly…I do know how to spell your name. Excuse my momentary lapse of rudeness.
Great post, great responses! Ed hit the nail on the head. Most days, I’m at a 4 or 5, and it’s true, when it’s DAYS and WEEKS and MONTHS….it’s really aggravating beyond words!!! In another support site, there is a great pain scale posted with “meanings” of the actual numbers; that’s probably not the right choice of words, but it was a great scale, and I saved it onto my computer. After I read that scale, I realized that what I was initially saying my pain was at (2-3), was really a 4-6 if I went by that pain scale!! Just goes to show you how much we “discount” our pain sometimes!!!
Thankfully I have a new rheumy that asked on my first visit, not “what level is your pain at”, but asked “What is it that you can’t do now, that you want to be able to do?” Boy, I gave him a list!! 🙂
That’s a great question, Marie. A good sign. 🙂
I have never been asked either one. Doctors could really benefit from our filling out these type questionnaires so that our condition is accurately reported in our charts.
FANTASTIC POST, KELLY!!
-Bob
Thank you, Bob!
Thank you for allowing me to comment .I am seeing my third Rheumatolgist this year .When I talk about my pain or fatigue they have quick to blame anything other then RA because I am getting Remicade in a high dose ,every four weeks I have been told it is (the pain) from the flu from lack of sleep etc.My latest has now changed me to six weeks for my infusion. I believe for that for that to work Drs have to be trained to hear and believe what their patients are saying.
Bob, I thank you for commenting & I agree with you. This seems to be a common theme to blame anything besides RA for RA pain. Doesn’t seem logical to me to do that either.
By the way, I can see from the admin position that we have 2 entirely different Bob West’s who post here. Folks can use the avatar (picture) to distinguish between them.
I love your articles and have told many people about this website for support and finally to hear the truth! My first rheumy left for personal reasons and never came back. Now the new one is young, arrogant, barely touches or listens to me and depends on labwork for disease activity! I am seronegative and have never shown inflammatory markers in bloodwork. I can’t tell you how wonderful it felt to read what a large percentage of us don’t show all four areas. now could you just tell my rheumatologist! I am now fighting the long term disability insurance company desjardins financial and what a nighmare! They won’t let up and I don’t trust this new doctor to support me as he never listens and I’m out of this office so fast! Any one else have any advice for me?
In pained frustration, I once drew an outline of a person & put a red X from head to toes where I had pain. I showed my doctor at my next appointment. He looked at it & understood better than ever my problems. It helped me so much, I recommend to try it!
I stopped taking all my meds none of them helped and only make me sick, very sick. This friday I will be going to a natural-path Dr . where they test my blood for many things check for allergy’s,the list goes on. So I’m hoping that we can find the root of the problem rather then covering R.A up with nasty drugs. One problem is enough for me I don’t need more health problems cased by the harsh drugs they give me.
Pain is not funny, but this kind of is. Dealing with RA and Sjogren’s for many years. In response to pain, I try to answer truthfully, but sometimes, I just say “I’m fine” when I am frustrated and know it doesn’t matter. After a few weeks of Sjogren’s flaring, I had to go to the dentist because I broke a molar when I was clenching my jaw because of pain. When the dentist was assessing my tooth, he said in amazement “You seriously don’t have pain with this?” When I replied “No pain” he said “tough chick”. The break in the tooth was completely through the tooth, part of the tooth was missing, and the nerve was reportedly exposed. I would love to have my dentist speak to my rheumy. In reality, the tooth was a “1”, only because I knew it was broken. My pain from my disease often exceeds the “10” on the pain scale when all factors are considered.