Maybe what my Rheumatoid patient reports is more useful than my tests?

Maybe what my Rheumatoid patient reports is more useful than my tests?


By Dr Irwin Lim, Rheumatology

I listened to Theodore Pincus speak on the weekend. I found the professor of rheumatology very entertaining and his ideas made an impression.

The clinical approach to rheumatoid arthritis is very different from the approach to typical chronic diseases such as hypertension or diabetes.

With hypertension, there is a simple gold standard of blood pressure. With diabetes, it’s measuring the HbA1C. Patient history and physical examination don’t play a big role, and what the doctor decides to do is typically based on the gold standard measure.

With rheumatoid, there is no laboratory test or any other measure that can serve as a gold standard. Blood tests can be normal in the face of significant disease. Clinical examination can be variable and deciding which joint is swollen or tender is not a consistently easy thing to do. Our job is difficult!

Because of this, composite disease indexes have been developed to help us rheumatologists make our clinical decisions. The most widely used, and the one I use, is the DAS 28. This Disease Activity Score takes into account measures from a physical examination, laboratory tests and a patient self-report of how much the arthritis affects them.

Composite measurements like the DAS28 are not perfect ( as discussed here by Dr Philip Gardiner) and the DAS28 is used by only a minority of rheumatologists in Australia (probably the same worldwide). Often, the failings of the measure are given as reasons why it’s not used by those who choose to rely on “clinical” judgement. But, I think a perception that it takes a lot of time and a lack of exposure to using it in rheumatology training play a big part.

Professor Pincus developed the RAPID3 (Routine Assessment of Patient Index Data 3).

This measure includes only 3  patient self-report measures. It should take the patient less than a minute to complete and can be scored by the rheumatologist in less than 10 seconds!

This makes me very excited. I profess that I’ve previously heard about the RAPID3 but never really bothered investigating it further.

In rheumatoid, what the patient says is important and should feature prominently in management decisions, especially as we don’t have great “objective”, “scientific”, gold-standard measures.

The RAPID3 seems very simple, almost too simple but it’s been shown to correlate significantly with the DAS28. And that’s without formal joint counts or blood tests.

Professor Pincus made the point that patient questionnaires (like RAPID3) and scores of function actually predict mortality better than joint scores, laboratory tests and Xray changes! They also better predict long-term outcomes such as work disability, joint replacement surgery, functional status.

Now, I’m not likely to stop examining my patients and I’m sure I will still be ordering blood tests and imaging tests. And of course, patient questionnaires like RAPID3 have their own limitations.

But, it would seem to make sense for my patients to self complete this rather simple RAPID3 form before they come into my room.

It provides another piece of information to document how a patient is going, in a quantitative way, to compare from one visit to another. A measurement. A sort of rheumatology-blood-pressure substitute.

Have you had any experience with the RAPID3? If you have rheumatoid, do you think it’s worth filling?

Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here.
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  • Annette

    It would take a big change in functional ability for this to change significantly enough to affect the final score. My doctor used the eRheum project for a few years and it was reassuring in the stability it showed and also in giving us both a printout as a starting point that went back a few years for comparison purposes. It was completed online a day or two prior to the office visit
    It also included a homunculus so that the patient could mark sore joints and severity prior to the visit, thus saving more time

    • Irwin Lim

      What happened to the project? It sounds interesting.

      • Annette

        Some rheumatologists at the Rebecca MacDonald Center for Arthritis & Autoimmune Disease were using it.
        It seems to have petered out after a few years (patient perspective). Maybe it was an IT support or funding problem? I’m sure Dr Bombardier or Dr Keystone would know

  • Jeanette

    I think this is an excellent tool…I dont think it would make any difference for me these days as my Rheumatologist only needs to glance at me to know where we are today! It would have been brilliant in the early days however when my path results did not indicate where we were headed and the text book said I should have mild disease! Unfortunately I could write my own text book now…..

    • Irwin Lim

      Jeanette, I don’t doubt you’d know much more than the average Dr.

      I’m trying to work out logistics for our clinic. How to introduce the questionnaire easily. We’re “paperless” mostly so introducing another piece of paper also goes against the grain!

      • Jeanette

        I understand the ideals of the paperless office and obviously that would be ideal but you know the old thing about the benefit outweighing the risk? I can clearly remember the frustration I felt when my pathology results were not reflecting anything like my symptoms. I think I would have felt less like a “kook” if there had been something like this that actually reflected how I was feeling and in some way demonstrated that blood results do not always paint the correct picture. I was new to the disease and felt it should be as clear cut as it is in other illnesses where the blood work show the presence and severity of the it was hard coming to terms with this crazy illness that did not line up. What I am trying to say with way too many words is that I think the extra paper would be worth it…even if you have to invest in a pine plantation to make up for it!

        • Irwin Lim

          The paper thing won’t stop us. There are other logistical issues but we’ll work something out. I’m glad to hear you feel such a questionnaire is useful.

        • Julie

          I strongly agree with Jeanette… It is devastating to feel sick, but yet the labs are not showing anything. I cant tell you how much this part of my autoimmune disease journey, was so emotionally hard, and sometimes, that is worse than any physical pain. I eventually lined up, but I still can be really swollen, inflamed with a normal sed rate, etc…. I have even had pericarditis, with little change in inflammatory markers or just a couple inflammatory markers be elevated. I do have crossover diseases, so that makes it even more perplexing at times, but like you, Dr :Lim, my rheumatologist looks at the whole picture, not just the labs.

  • Chetan Narshi

    Great blog post Irwin. I have not used RAPID3. In the UK we
    are very much focussed on the use of DAS28 which we need to monitor
    should a patient need to start a biologic, as we need to seek
    approval via NICE (National Institute of Clinical Excellence). I
    think the tool helps with a consistent measure of functional
    ability that can be compared from visit to visit. All the more
    important if the patient sees a different doctor at the next visit.
    My only concern is that it may not be able to distinguish between
    mechanical and inflammatory joint pain, so a further history needs
    to be saught. I might consider using it in the future!

    • Irwin Lim

      Chetan, I currently use DAS28 as it is made easy by building built into our Medical Practice Software.

      I don’t see the RAPID3 being a replacement for DAS28. Just additional information that a patient can bring into the consultation. A quick scan of it and you’ll have a starting point to discuss how things are.

  • Naomi Creek

    I think the Rapid3 is a good idea. If you want to introduce it but want to remain paperless, what about handing the patient an ipad or tablet to fill it out in the waiting room? Another idea is to create an interactive pdf that the patient fills in before their appointment and that gets emailed to you. Other than that a simple app could be developed :)

    • Irwin Lim

      Naomi & Jeanette, Sorry but I gave you the wrong impression re the paper. Not a big issue.

      More so, if the logistics of a general rheumatologic clinic vs a rheumatoid-only clinic. In the latter, you would just give the RAPID3 to every patient in the waiting room, In the general rheum clinic, admin staff will not (and should not be expected to) know which patients have rheumatoid to hand out the forms to.

      I think the answer in our particular setup will be to provide and educate our RA patients with the RAPID3 forms so that they attend each consultation having filled in their form. Empower & make this the patient’s responsibility. What do you think?

      Also, our rheumatology care coordinator will play a role.

      • Naomi Creek

        Oh I see. Yes I would put the responsibility into the patients hands. I know many patients who already use apps and other “wellness” forms to take to their rheumatologist. I think it is a good for patients to self assess and understand their condition and not always rely on blood results and what the dr thinks. This way its a shared knowledge and a nice reference for looking back on.

  • Jeanette

    Irwin, although this is not completely on topic…it is related and it is the only forum I have to share something with you so I picked the closest topic! I found this link to an App for RA sufferers to store data between appointments so they dont forget valuable information. Although it may not be suitable for you more senior patients (my own son referred to my age group as elderly recently which i did not let go through to the keeper) it may be beneficial to a fairly wide demographic none the less. I will post the link here and hope it works!

    • Irwin Lim

      Hi Jeanette

      Thanks for letting me know. I just tried to download the app on the itunes store but it isn’t available in Australia. Only the USA itunes store. Do you have the app?

  • Stevi

    Ironically I was involved in the development of that App (trackmyRA) and I can’t download it either as I’m in Canada. Last I spoke with the developers there was no plans to extend it beyond the US. To say the least I was disappointed. I use a different app to track my multiple musculoskeletal illnesses and the corresponding appointments, tests and the like and it’s called My Medical. I don’t track every aspect of my illnesses. I did it in the early days and it became too depressing and all time-consuming. Now I just keep track of the highlights (or should I say lowlights)

    • Irwin Lim

      That’s disappointing for you. How did you get involved in the app development?

      Also, would you think that filling in a questionnaire such as the RAPID3 would be useful for you & your rheumatologist?

  • Stevi

    Hi Dr. Lim,
    I got involved in the App through Creaky Joints (Seth Ginsberg’s site). I’m a bit of a geek and use my iPad to keep track of my multiple illnesses and I thought that an app to help my Doctors would be a good thing.
    My current rheumatologist has a problem child with me as a patient. I have failed every biologic we have tried (and we have tried a lot). The only drug that gives any kind of relief is prednisone and that’s led to diabetes. We’ve tried weaning off the prednisone and the results were not pretty. Currently we are working with Actemra at the lower dose and so far nothing has changed. The plan is to double the dose next month to see if that provides some relief.
    With a prior rheumatologist, I have tried 2 experimental drugs (to no effect) and frequently filled out the long version of the questionnaire (DAS 28) as part of being a live lab rat. I never felt that that particular rheumatologist paid any attention to the questionnaire or me as a patient hence he is no longer my rheumatologist. My current rheumatologist spends much more time with me examining me and talking with with me, about how I am doing and what’s going on with me. I am not sure that the questionnaire measures enough change. I suspect if I filled it out it, it would be the same each time. Having said that I’m only the patient, maybe seeing no change says more to the physician than it does to the patient. My rheumatologist knows I’ll try anything to be able to get more out of life so I would happily fill it out if it helped him out. Especially since the side-effects are almost non-exisitant :).
    Sorry it’s such a long answer, but I felt you needed some background information in order to understand my answer.

    • Irwin Lim

      Thanks for the answer. I am leaning towards introducing the RAPID3. I think it will give a way to track progress efficiently. It’s not going to replace all the other things we do in a consult but I hope it provides additional info from patient to Dr. It may stimulate questions in times when we forget to ask more comprehensively about the disease.

      I met Seth recently and come to think of it, he did mention the app. Too bad it’s restricted to the USA (I wonder why?).

  • Christy

    I was looking at the form and it’s brilliant. I’ve struggled with how to log my health since I took a self help course for managing FMS or CFS. (I have RA and FMS). This is brilliant – a once a week overview of how I felt. Everything just seemed to be too much of a burden to track because I was thinking of collecting multiple data points daily including pain, exercise, and mental health. I find that when I go to my rheumy appointments that my husband has a much better idea of how I’ve done over the span of time since my last appointment that I do. I get stuck in the weeds and can’t see the big picture. I think I’ll start tracking my health with this weekly so I can keep track better. Thank you for sharing it.

    • Dr Irwin Lim

      Glad you like it Christy. I think more and more rheumatologists are coming around to the idea that we need some way to better & more efficiently measure how our patients feel. It’s even better if this measure is something the patient also feels is useful!

  • Stevi

    Dr. Lim,
    I thought I did this already, but apparently not. I got an email last week from the developer I worked with to let me know the MyRA app now available worldwide. You can get MyRA from your local Apple App Store:
    Sorry I for the delay.

    • Irwin Lim

      Thanks for letting us know Stevi. I’ll download it soon.