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Saturday, 30 November 2013

If You Consulted My Rheumatologist This Is What Might Happen

This is a description of what occurs during a typical visit to my rheumatologist, in case anyone wants to compare. At the initial visits there was more detail than described here, but after years of seeing him there's a comfortable pattern.
Company while I wait for the doctor

At each visit, in addition to normal conversation, the Dr checks on my medications and asks if there are problems connected with them. Then he asks whether any new issues have come up since the last visit, good or bad.

In front of him are the forms I filled out in the waiting room. That gives him my assessment of pain and disease activity, and he sees how I rate my quality of life (HAQ) and ability to accomplish certain activities.

Then he checks for tender and swollen joints in my hands - the knuckles and the PIPs (Proximal Interphalangeal joints) - using the four fingered method of assessment. He marks this down on the homunculus he has stamped on his sheet of appointment notes. There's a space to record the total number of swollen and tender joints. I think he records morning stiffness as well. It is always asked. He doesn't bother with the finger joint closest to your fingernail. Most rheumatologists say swelling there is not RA.


Homunculus drawn by me

On many visits he checks on the range of motion in my elbows and shoulders. It's no use any longer to check the range of the wrists since mine are damaged and both are now fused.

The next step is getting up on the examination table. He checks my blood pressure and listens to my breathing with a stethoscope, front and back. Once I lie down on some visits he palpates my abdomen to determine if the liver is enlarged. At this point he checks lymph nodes too.
Next it's the lower body - internal and external rotation of hips and whether I can raise my legs, and a quick look at the knees and ankles.
Musculoskeletal exam

After this I sit down again and we discuss what happens next. I had a look at the chart and there's a space the doctor to record his impressions also. 

Then comes the plan. I complained once on Twitter that plans were often not communicated - that may be true for the long term, but short term I leave knowing what should happen over the coming six months and with a new appointment date, bloodwork requisitions and any prescriptions needed.

Every year or two, if my ankle is painful he will give me a cortisone injection in that joint. For other joints I have very infrequently had ultrasound guided injections that needed to be scheduled through the hospital.

Sometimes he has a resident or fellow with him. This slows the process down but is often interesting. The last time I saw one he noticed something new, so even though it is sometimes repetitious for the patient it can be worthwhile. 

Though he covers a lot he is able to do it efficiently and carry on a conversation at the same time. It's very satisfying to hear expert opinions and to discuss health issues. 

Even though I have had arthritis for so long I approach my appointments with hope and expectation. There is always the hope in my mind that a new idea or strategy might change my life  for the better. It's not likely, and yet there are actions that can help you do well with chronic disease that are not medical. 

As I have learned more about my health and my disease I am able to have much more in-depth conversations with my doctors. Learning more is always a good idea.

7 comments:

  1. Thanks for sharing this, Annette - it's marvellous to read what a "real" rheumatologist does! I have experienced this with my retired rheumy - he was a hell of a lot faster on follow up appointments I suspect, but still very thorough.

    It was such a delight to see you recently. I'm sorry I have been awful in communicating... it's been a bit of a tough time... I did want to tell you how much I enjoyed that day and my only regret is that you live so far away! I would so love to be able to meet you face to face more often. You are a very dear person and I feel lucky to call you friend. <3

    Many blessings,
    Jane

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  2. I thought people might be interested. There is a wide variation in what people say about their appointments with rheumatologists, and I know mine is thorough. I always admire those with good people skills but for a doctor you hope the knowledge is there to back it up.

    I was terrific to meet you and Carmen in real life and you picked a good spot.for it. BC is so full of natural beauty. I hope we can do it again some day.

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    1. Hi hon, sorry I missed this - I seem to have lost the "subscribe to comments" feature again (brain fog) :(

      It was wonderful to meet you in RL - and yes, I definitely want to do it again! I'm just going to fire you an email! :)

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  3. Hello Annette
    Thank you for sharing this. It seems that the majority of the consultation is monitoring (as are the pre-consultation questionnaires) and I wonder how that data is used. Does it inform decision on adjusting your treatment? Does he look back over your past treatments and compare what your scores were then on different treatments? Is it all stored on paper? I'm not saying that tech is the solution to every problem but how useful would it be for you to be able to access this data and spot patterns yourself?
    I'm also interested in the comments that suggest that the monitoring reflects that he is being thorough and therefore is justifiably expert. In primary care tend not to do so much monitoring unless it is directly going to lead to changes in management, so we might appear less thorough but I hope we do the planning more clearly.
    Thank you very much again,
    AM

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  4. This doctor did a pilot project for 3 years from 2007 to 2010 using a computerized chart of patients reported measures. Patients filled it in the day before. It was really valuable to my understanding of fluctuations in my health. Realizing how insensitive some of the scales used for the Global Assessment are was an eye opener.

    The doctor does not usually look back beyond the last tests, or the past year or two. As part of the instructions at the end of the visit he also makes referrals if needed. He is willing to refer based on my concerns as long as they are reasonable. He has not yet refused, except in a case where he was unfamiliar with specialists in that area of practice.

    I'll try to scan and tweet a sample of how that looked - it might make a good blog post. Some of the scores in this chart are generated by my answers to questions that are part of the eChart.

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  5. Thanks- have seen your chart now:) Why was the system not adopted? You found it useful so I wonder of others didn't. It's also interesting that it pointed out to you how insensitive the global assessment was. Is this still used, and if so for what reason? AM

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    1. I think the OMERACT (Outcome Measures in Rheumatology) international group may be discussing this point about the Global Assessment. I've raised it a few times. It would take a catastrophic change for the worse in my health to affect that scale

      I hear that something similar to the chart system is in use here by a group called OBRI (Ontario Best Practices Research Initiative). I think my doctor was only involved in the pilot project. I can still see it but it is no longer functional or I would still use it myself.
      This kind of tracking is far from a personal device, but parts of it would be quite useful as a way to track the way your health is trending








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