Clinic: Dosing Guide

As we still attempt to fashion some sort of trial for our dosing guide, we are working on another project Dr. Lowenthal presented to us. For our “trial”, we just don’t have enough patients with poor adherence to create any kind of pool big enough to make our results somewhat reliable. For now, we’re for the most part just giving everybody dosing guides and not creating a control group (those w/o guides). As unscientific as this is, the doctors and nurses are referring patients to us whom they think really need the guide, at a rate of 1-2 per day. Given the current situation, it makes more sense to just allow the people who need guides to get them–we won’t be able to bring together a “scientific” study. There are many confounding factors in creating a “scientific” study, mainly that all pts referred to us will also have to go through adherence class again, which itself may raise adherence rates. I would rather rely on the patients’ comments when they come back to the clinic for their next appointment to see if the guide is helpful.  I think this may end up being a lot more subjective than we all expected, but I’m okay with that.

We had an 11 year old pt who came in the other day with her mother, who had recently taken custody of her due to the death first of a nanny and then of an aunt, who had been caring for the girl very well and making sure she took her meds. After I created a dosing guide for the mother (the girl wasn’t with us), she went back to the waiting room as usual. As I went back to the nurses to make sure the guide was correct, they told me about the family’s situation–the mother was quite irresponsible, and the 11 yr old girl was taking the ARVs on her own! She had been doing a very good job despite the complexity of her regimen, but she still needed help, which she wouldn’t get from her mother. Her eyes lit up as I explained to her the dosing guide and how she could use it, as the mom’s eyes wandered around the room in boredom. I think we are better off helping the 5 or 6 children needing help who come in each week, rather than spending our time creating a trial. A doctor at clinic suggested that we try to set up a visit at one of the SOS Villages (orphanages) to see if we would be able to give all the “mothers” there dosing guides for all the kids who need them.

Our next project, presented to us by Dr. Lowenthal, is very interesting but is a lot of desk work! The Baylor COE is looking into the necessity for Resistance Tests in determining 2nd or 3rd line treatments, so Rachel and I are going through pt files to collect the necessary information for such an analysis. Background: While a pt is on ARVs, the virus in his or her body may develop certain mutations which make the virus resistant to certain types of drugs. The likelihood of resistant mutations is much higher when a pt has had poor adherence. The doctors would usually order a resistance test after adherence rates had risen to an acceptable level but the viral load had not been suppressed (the ARVs weren’t working), as this can be indicative of resistance mutations. Rachel and I are going through files and recording the drug regimens, duration of failure (viral load not supressed), mutations found on the resistance tests, and other pertinent information. Once we have the spreadsheet complete, Dr. Lowenthal and we will go through the data to see if there are any trends or any situations in which a Resistance Test (RT) should be completed. For example, we may find that unless a pt has been in failure for 2 or 3 years, the mutations are minimal and not resistant to 2nd or 3rd line drugs. We have about 100 pt files to go through, and we’ve finished 30 so far. It’s really interesting to go into old pt files and to read the clinic notes, both in terms of learning about how the disease manifested itself in so many different ways in these pts and also to see the changes in treatment. In the files from 2001, 2002 and around that time, most of the drugs are listed either by full generic names or by trade names, not the common 3-letter abbreviations used now. In each pt’s file, a social history is also kept, and some of the stories are heart-breaking. Baylor COE seems to be very good about having counselors for these kids and finding them the help they need. I hope to soon be updating ya’ll on what we’ve found!

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