8 reasons why rheumatologists should collect patient self-report data in routine clinical care

8 reasons why rheumatologists should collect patient self-report data in routine clinical care


By Dr Irwin Lim, Rheumatologist

I freely admit that I don’t. Not yet.

This is an open discussion I’m having with myself and my team. We should collect this patient data, and I lean towards the simplicity of the RAPID-3 (read about & download it here).

The problem is the logistics of actually handing out and getting this questionnaire filled in BJC Health’s particular setting. Our rooms are frequented by many more patients that those seeing the rheumatologists. Our multidisciplinary, multi-practitioner setting means we have to think a little more carefully about introducing a global initiative due to the burden on the administrative staff & the different relevance to different subsets of patients.

But that’s for us to work out.

Collecting patient self-report data is useful because:

  1. The data patients report correlates significantly with the data doctors collect – joint counts, ESR, and X-ray changes
  2. It is more reproducible than joint counts, lab results and X-ray scoring systems
  3. It’s as useful as measures such as the ACR20/50/70 or DAS used in clinical trials
  4. It’s very relevant to the patient and their families
  5. It better predicts work disability, premature death, costs of the disease, the need for joint replacement
  6. It saves time for patient and doctor
  7. The data documents disease status and provides a measurement that will allow for comparison from one visit to another
  8. It should help your rheumatologist to be a more effective and hopefully, understanding doctor

I’m a fan. It’s going to happen.

I’d really love to hear your experience with using patient questionnaires, either as the rheumatologist or as the patient.

Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here.
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  • http://ywasg.com Naomi Creek

    I think it’s a great idea and would be worth the effort if the data is collected in a way that can easily be accessed, updated and compared by both patient and rheumatologist.

    The main surveys I have done were when I was on the drug trial for Actemra and I did feel that many of the questions were good and related to the person’s real life situation/coping which was as important as the blood tests. I always felt the pain scale was a difficult one to judge as your life with chronic illness changes and you do adapt to things so it’s hard to compare a year ago to today for example.

    Your point 1 – “The data patients report correlates significantly with the data doctors collect – joint counts, ESR, and X-ray changes”
    I’d have to question the ESR part of this as in many cases this does not reflect a patient’s disease levels and really feel it is a test that should hold little weight in diagnosing and prescribing medication. I could probably get 20 or more people I know who have very low ESR but their RA is very active. Perhaps they have been misdiagnosed but this is the case.

    Is there room to incorporated something like this into the Government’s E-Health Record?

    I love that you are continually thinking of new and better ways for the future :)

    • Jeanette

      Naomi, I agree regarding the ESR and would also like to add CRP here too. Ultimately there are some patients who never reflect CRP levels anything outside normal…but also the biologic agents (some more than others) have a huge impact on this component and even though someone may previously have had an elevated CRP, after using the biologic drugs it may be reduced to “less than 2” and the patient still have significant symptoms. So whilst we are using more and more biologics in the treatment of RA we need to view the blood results with a different approach given they may be impacted by these agents without significant clinical response.

  • Jeanette

    .Hello Irwin……I am back! (two weeks in hospital has kept me a little quiet Irwin…but look out, I am back on line now!) For me the collection of actual patient data rather than using pathology results as the baseline is extremely pertinent to me as my blood results have never really represented the severity of my disease…I am fortunate to have a progressive (GenX) rheumatologist who looked outside the box and used clinical examination and presentation over blood results but I have to say when you are the patient with bloods that look fine and you cant walk you start to doubt yourself. Fortunately I also had widespread inflammation and swelling that was very obvious despite the lack of blood work but as frustrating as the path results can be for the doctor …you have no idea how much self doubt creeps in when you are the patient. I cant help but believe if this idea had been in play then, and less emphasis was placed on the blood work results, how much less confronting it may have been. I truly did doubt my own diagnosis back then…although as i look at the deformity on my hands that is spiralling out of control I know now there was definitely no mistaking the diagnosis. It would have been nice to be assured of that at the time….a time where you are already emotionally vulnerable when you learn you are facing a lifetime with a chronic illness.

  • Rosemary A

    Like Jeanette, my blood tests rarely reflect my RA activity accurately as I am on Orencia, MTX, Arava, Pred and Celebrex. All these are only just managing to keep my RA managable and I flare up quite frequently. Instead of having 2 or 3 joints with high activity I ususally have 20 or more with medium or low activity which still compounds to a lot of pain, it’s just not normally visible.
    After one appointment with my rheumy late last year my bloods were looking fine as usual and I happened to be there on a good day so I believe my rheumy got the impression that things were ok with me and I left feeling as though he had almost dismissed my pain levels and low or non existant. That was my fault as I didn’t explain myself properly that day and we also talked about other things in that limited time period.
    I found one of those self assessment reports online and completed it more for my own benefit but I did take it to my following appointment as a way of validating how I was feeling. Like Jeanette, I had begun to doubt myself and I felt the report gave me some concrete proof of what was really happening. I admit I did not really expect my rheumy to take the report seriously (although he normally does listen to me very well). I thought he would view it as a bit gimmicky and not as a valid measure. I was quite surprised when he jumped at it and thanked me for bringing it in. The questions about coping and general well being were particularly interesting to him and gave him a better understanding of my situation and he asked to keep a copy in my file. I left that appointment feeling much more satisfied and so glad I had brought that report there with me. I would definitely recommend that others use them too,

  • http://bjcconnectedcare.com Irwin Lim

    Rosemary, welcome to the blog and thanks for the feedback. It’s what I hoped to hear – that patients feel that it’s useful too.

    Jeanette & Naomi: I think that in about 30% of RA patients, the inflammatory markers are normal. You are quite right. ESR & CRP when elevated are useful to track but in some patients, they are not useful.

    Indeed, we recently send out another GP mailout to remind them not to depend on the ESR & CRP when making a diagnosis of inflammatory arthritis.

    Btw, I have no experience and haven’t given much thought as yet to the proposed e-health record.

  • http://rheumatologe.blogspot.de/ Rheumatologe

    Hi Irwin, I just needed that statement as someone wants me to quit collecting RADAI data, which is close to RAPID-3! I use DAS28, but at the same time I use the RADAI to know more about my pats. and to be independent from lab results. RAPID-3 and RADAI are good tools to monitor disease activity.
    CU Lothar

  • irwinlim

    Good to hear. We’ve used it for 5 months and it continues to be a good tool to trigger conversation.