Breaking Ground with “The Self-Managed Disease”

(Sort of an addendum to my last post)

With the shifting focus to official recognition that successful diabetes management lies in the hands of the patient rather than the medical provider, there’s a whole lot of flurry of late about “behavioral issues.”

The guru of diabetes behavior is of course Dr.
William Polonsky, author of Diabetes Burnout and founder of the new Behavioral Diabetes
Institute
(and also a really nice guy!)

DrpBetween moderating panel sessions at this weekend’s
ADA Conference, Dr. Polonsky was kind enough to give me a moment to ask him
about this phenomenon.
“So, diabetes is really unique this way, isn’t it?
Being the only disease that is managed more by
the patient than by the doctor?” I asked (thinking myself quite clever).
“No, actually, it isn’t,” he said. “What about
cancer? And heart disease? Patients have to be
diligent about testing their blood pressure, and about their diet –
avoiding salt, for example. Actually, we’re
breaking ground here for other diseases by focusing on the behavioral side.”
“Oh, I get it,” I said (in another fit of
articulation).
But I do get it! It’s the old notion of
“compliant” versus “non-compliant” patients turned inside-out. No matter what drugs and treatment plans are
available, they will only work if the patient
takes charge and uses them proactively.
This simple fact has had an immeasurable effect on
countless clinical studies attempting to gauge
the success of medical therapies. For example, if you send a bunch of patients off with capsules they’re supposed to
swallow and a meal plan to follow, and then
measure their blood pressure levels (or whatever’s being studied) weeks or months later, how do you really know anything for
sure? Did they really follow instructions? They
may say so, but everybody likes to get an “A,” right?
On the flipside, patients involved in studies where
they’re closely monitored tend to overachieve for
the period while they’re in the limelight. This well-documented occurrence is called the Hawthorne Effect.

The point is (yes, I’m getting to it!) that
patients aren’t just abstract “subjects” at which
doctors can throw new drugs and devices. Rather, they are the key people who
will make the medicine work. Like
so many “new” concepts in medical science, common sense is finally coming to the surface here: patients’ behavior matters
at least as much as the treatments
available!
(Anyone with brilliant ideas on how to motivate
people to take better care of themselves can
contact Dr. Polonsky’s institute here.
Make sure to cc me at amy@diabetesmine.com as well!)

7 Responses

  1. carol
    carol June 15, 2005 at 11:12 am | | Reply

    My daughter (8) was diagnosed 1/25/05 and when I called her endrochron day two out of the hospital with her numbers, his first comment was: what trends are you seeing? five days after diagnosis! After I recovered from shock, I appreciated the motivation; to have us be the point people on the team. This Dr. answers any question with “what would you do?” It helps him judge our understanding and encourages self management. I think it’s a great approach. As I become independent, I am teaching my daughter to be so, as well. As I tell her often: we’re smart women and we can manage this. And we can. And we do. Thanks for your site.

  2. Nick
    Nick June 15, 2005 at 12:51 pm | | Reply

    In December 2004, I started putting all my blood sugar readings into a computer spreadsheet. This allows me to see trends better, as well as compute daily averages and rolling 7-day averages.

  3. Shannon Lewis
    Shannon Lewis June 16, 2005 at 4:27 am | | Reply

    My son’s endo is the same as Carol’s in that if we call her with a problem she asks “What do you think you should do”? Then she’ll either say yay or nay to our solution.

    My motivation to caring for my son is not only that he’s my son and I want to protect him from harm, but seeing my 29 yr old cousin in end stage Type 1 diabetes because HIS parents didn’t help him out when he was a kid and he burned out as a teenager.

    Seeing him in a wheelchair after 3 strokes, 1 quintuple bypass surgery, dialysis, on the waiting list for both kidneys to be replaced, legal blindness…that’s enough motivation for me to get my son on the pump within a year of diagnosis, test him several times a day, dose him when needed, pouring over glucose numbers to dectect trends, etc, etc.

    Keeping Brendon from turning out like my cousin is my own personal motivation.

  4. Shannon Lewis
    Shannon Lewis June 16, 2005 at 4:38 am | | Reply

    I just wanted to add that my cousin is an extreme case. He would only test if he felt lousy, dose if he felt lousy, etc. Since his parents pretty much left his management to him since he was 7, burnout contributed to his lackadaisical ways.

    Sorry if I scared anyone, but if you test and dose regularly, keep up with endo visits and test for A1C’s, damage won’t happen to that extreme as I described above.

  5. AmyT
    AmyT June 16, 2005 at 5:08 pm | | Reply

    Nick:
    I know I should use the tracking software, but somehow I just don’t want spreadsheets on my blood sugars!

    I’ve got spreadsheets for work, for my kiddies’ activity schedule, nanny schedule, travel plans, etc., etc. Tracking overload!

    Although it would be nice to see the trends…

  6. DensityDuck
    DensityDuck June 20, 2005 at 9:42 am | | Reply

    With a pump, spreadsheets are a lot more important because there are more degrees of freedom in your control; do you adjust your basal rate to get the baseline lower? Do you change your carb/BG/bolus ratio? The spreadsheets are very important for that.

    Also, I’ve found a very useful thing to add to the spreadsheet. If you’re on a sliding scale (which, frankly, everyone ought to be) then the delta is often just as important as the value. So on your spreadsheet, put in columns for “change to next BG test” along with the usual “BG test”. Then, when presenting my average values, I put in a “high correction” (average of all deltas when the BG reading was >140) and a “low correction” (deltas when the BG was 60, which would mean that the typical BG reading could have been as high as 150…or as low as 30!

    So you see, just using “average” doesn’t really help to determine how well-controlled you are.

  7. Pamela Vander Linden
    Pamela Vander Linden July 18, 2007 at 6:45 pm | | Reply

    My 18 year old son was diagnosed almost 10 years ago. He has “fits” for a lack of a better word of agitated, agressive angry behavior. There is no rationalizing with him, it has even led to his arrest. Of course, when asked if he has tested his blood sugar, he gets extremely defensive, “It’s always the diabetes”!! But many times it is and he is not testing to correct his glucose value, that will in turn effect his behavior. He is a very angry man and extremely difficult to live with. I have expressed my concerns at his 3 month appointments, but the Drs don’t seem to want to touch the emotional/behavior aspect of the diabetes. Sorry, this is huge!

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