Let's Study........

Yesterday morning we had the usual visit. Doctor, social worker, nurse, nurse practitioners - and the research study person-of-the-week. On at least half of our visits so far we have been invited to participate in research studies, all of which have been specifically designed for kids who have had transplants.

The first one was a simple questionnaire about our family's smoking habits. They were amassing information about how secondhand smoke impacts chronic kidney disease.

The second is to be a long-term (15 month) compliance study where Babygirl will be enrolled in a medication education coaching program. We agreed last week to enter the study, but this week discovered that she can't enroll until she's at least three months post-transplant, so we have to wait a few weeks on that. She was a bit disappointed - that one comes with a (minimal) gift card stipend.

The third we enrolled in yesterday. It was also a questionnaire-type study, this one aimed at determining barriers to compliance with meds. The study leader asked Babygirl to name all her meds (which she was almost completely able to do), and to tell her what each was for (again, almost complete success - we just need to work on the name of that blood pressure med!). The study leader then asked about medication side effects, both specific to tacrolimus (her main anti-rejection med), and general to all her meds. I got to do a questionnaire about MY barriers to the meds (cost, refill issues and so on) and one on how I perceive that Babygirl is doing with her meds. She got to complain about the weight she's gained because of the prednisone. In 9 - 12 months they will repeat these. It'll be interesting to see if our answers change.

It's interesting to me that we have not been asked to evaluate a new or experimental medication.  I think I understand why - who on earth would permit someone to give their precious child an unproven therapy?  And who would risk putting their child in the placebo group?  Perhaps those studies will be offered to us if she experiences rejection, or an intolerable side effect to one of the existing meds.

In the meanwhile, I'm encouraging her to participate in whatever they offer.  I'm trying to teach her how science works, and why it matters for the next kid who gets a transplant for them to collect as much data as possible from HER.  In a way, it's going to become her random act of kindness each time she agrees to do a study, however silly or mundane it appears from our perspective. 

And hey, if they toss her a gift card, so much the better!

DeeDee