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What data do you need to give to your clinicians?

idiopathic Message
2 Jan 2009, 04:17 PM

Hi all, I am working with an academic medical center specializing in the treatment of primary immune deficiencies. We wanted to help the clinicians work better with their patients. What data do you have the you would like to submit to your clinicians? For example, batch numbers of home therapy medications, weekly symptoms, or visits to the ED? Thank you! mohammad
Suzelle Message
28 May 2009, 10:01 AM

I have an Immunoglobulin Deficiency - all 13 Isotype levels are way below normal. What information are you looking for exactly?
idiopathic Message
29 May 2009, 08:50 AM

Ah, I see your point :-) Here is the kind of data that I know would be useful for some clinicians I work with in the UK: 1 - symptoms from the last week (cough, breathlessness, sputum, nasal discharge, diarrhoea) 2 - effects on life: visits to physician, antibiotic therapy, days off work / school 3 - for home therapy, batch numbers medications and site and number of attempts for needle. So my question is, what other kinds of data would your clinicians find useful, or would you like to collect as a patient? Thank you!
Suzelle Message
29 May 2009, 09:54 AM

Oh I see. Thank you for your reply. Symptoms from the last week: I've had a post nasal drip, sore throat and a deep irritating cough with extreme fatigue. I'm just over the worst of the flu - (it's winter here now). My medical cover is almost exhausted - getting treatment here is extremely expensive and I almost always need two different types of anti-biotic courses in order to overcome an infenction / illness - I seem to be falling ill now every two months. Taking off from work because of being extremely ill, is now almost impossible for me to do - I have to go to work every day, no matter how sick or exhausted I am feeling. I'm being treated by a doctor with a three monthly Polygam Infusion of 24 grams. I've had this treatment for over a year now but I can't see or feel any difference really because I'm healthy for a while and then sick soon after again. As a patient I would like to have more information about this disease and different types of treatment options availbale - It would be very nice if the effects of the illness could be made known to the bublic or at least colleagues, friends and family.