Measuring disease activity

Autoinflammatory diseases are diverse: they are caused by different genes, present at various stages in life, and cause a variety of symptoms.  Even in patients with the same disease, such as familial Mediterranean fever (FMF), attacks may differ widely; some can have severe abdominal pain while others develop headaches.  As a result, measuring disease activity–how active the disease is and how severely the patient is affected–has been quite difficult.

Fortunately, researchers recently published a useful checklist for measuring disease activity in patients with four different autoinflammatory diseases: familial Mediterranean fever (FMF), mevalonate kinase deficiency (MVK), cryopyrin-associated periodic syndrome (CAPS), and TNF-receptor associated periodic syndrome (TRAPS).  The checklist is called the Auto-Inflammatory Diseases Activity Index (AIDAI), it reviews 12 symptoms that are valuable in distinguishing patients that are having a lot of disease activity (and therefore may need additional therapy), from patients who are having few symptoms (and are doing well).  AIDAI

Aside from its use in clinical research, I think this checklist can be useful for doctors and their patients to help with disease management.  Sometimes it’s difficult to say whether a medication is effective.  However, if a patient checks off that they had 5 days with 3 different symptoms in January, but 6 days with 4 different symptoms after starting a new medication in February, it is clear the medication is not working.

Finally, this checklist can help doctors diagnose patients with recurrent fevers or symptoms of unknown cause.  Keeping a journal and noting the 12 symptoms included in this checklist can help  to determine whether the patient has an autoinflammatory disease, and if so, which one.

Although it wasn’t tested specifically in other autoinflammatory diseases (such as PFAPA), it is likely that this checklist can be useful as well in other conditions.

Interested in using this checklist to keep track of symptoms?
I created a PDF file that you can download and print, or an Excel file that you can use to log symptoms into a computer/tablet/phone. Using the checklist is simple: each sheet represents one month, and each row indicates the day of the month.  It is only necessary to complete the checklist on days when the patient is having symptoms.   Only symptoms related to autoinflammatory diseases should be recorded (eg. fevers due to ear infections should not be noted in this chart).

Do you think this checklist can be useful for you?  How do you keep track of symptoms?


Reference:
Piram, M. et al. Validation of the Auto-Inflammatory Diseases Activity Index (AIDAI) for hereditary recurrent fever syndromes. Ann. Rheum. Dis. 73, 2168–2173 (2014).

 

 

3 thoughts on “Measuring disease activity”

  1. Hey, this could be really useful! I shall start using it straight away. My symptoms vary from day to day, and I have a diagnosis of M.E., which doesn’t help me manage my condition; I’ve recently “discovered” connective tissue disease and think that I may have Ehlers-Danlos Syndrome – or something! Using this chart will help both me and the specialist I eventually see. Thanks so much for being a good communicator and for sharing this. I’ve just subscribed to your blog; sounds like you can educate me about my journey. (It’s already been a long one – I’m 50 and have never knowingly seen a rheumatologist, tame or in the wild!) Keep up the good work; it’s appreciated.
    Kind regards,
    Katherine

    1. Hi Katherine. Thanks for your kind words. What do you mean by M.E.?

      I’m glad this post was useful to you. I also wrote a piece about connective tissue diseases like EDS which you mentioned, which you can find here:
      http://autoinflammatorydiseases.org/rheumatology-2/what-the-heck-is-a-connective-tissue-disease/

      Good luck trying to make sense of your symptoms…keeping a diary or symptom checklist can be extremely useful. Also, take pictures of any rashes that may pop up!

      Let us know how you do!

      Jon

  2. Thanks for this spreadsheet – seems like the easiest way to lay out varying symptoms that I have seen thus far. I added a formula to calculate how many days per month had a fever to my own version.

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