Monday, January 23, 2012

When Do Complications Matter?

One thing I can't help noticing in reading about diabetes complications is this: when researchers or writers want to use real data to make it sound like most diabetics don't have x complication, they talk about the most severe forms of it. For instance, instead of talking about diabetics with retinopathy, they talk about diabetics who are blind, have proliferative retinopathy, or whose retinopathy is rated severe. On the other hand, when researchers want to talk about how common some complication is, they include every form of it, for instance, mild retinopathy found on a fundus camera, or even "pre-retinopathy".

This confuses a lot of people. One prominent member of the diabetes online community has repeatedly used two studies to claim that diabetes no longer threatens lives, in a totally erroneous way. One study looked at the frequency of end stage renal failure in diabetics diagnosed at various ages, over roughly twenty years; the other looked at risk of death in diabetics in the first twenty years past diagnosis based on the presence of any kidney disease.
The observed deaths for those with no kidney disease whatsoever in the first twenty years past diagnosis was pretty much the same as for nondiabetics. The observed incidence of kidney failure in the first twenty years past diagnosis for those diagnosed under the age of 5 was nonexistant.
So this guy says, tada, diabetics without kidney disease don't die early, our kids don't get kidney disease, therefore they don't die early.

Problem? The first study defined diabetic kidney fairly broadly (they could have probably been even more broad) as any two positive microalbumin urine tests over the study period. That included just over 70% of the group. A very small portion actually had kidney failure.
The second study didn't look at kidney disease, just kidney failure.
The other problem, of course, was that it only looks at a twenty year period. If I live 25 years past diagnosis, I'll be dying young. Diabetes is definitely capable of killing a person 30, 40, 50 years past diagnosis.

Anyways, another online person recently ranted about somebody who said that retinopathy was common in type 1 diabetics, about how that person was an ignorant so and so, that these days it's not. Well... retinopathy is common in type 1 diabetics. Even in teens. Averaging a handful of European, American, and an Australian study on what portion of teenagers living with type 1 diabetes have retinopathy as shown by a fundus camera, the rate is roughly 1 in 7 boys with type 1 diabetes and 1 in 11 girls. And that's been pretty stable for over twenty years. Looking specifically at studies of teenagers who'd had diabetes for more than five years, the rates jump up to more than one third of teens with type 1 diabetes. Looking at adults, the numbers are considerably worse; in most studies, by fifteen years, the majority of participants have retinopathy.
This was even true in a study of Swiss adults diagnosed as young adults/older teens, diagnosed less than 20 years ago, tested for retinopathy 12-15 years past diagnosis. Their average A1c was 7.0% and the portion with any retinopathy was 61%.

The overwhelming evidence is that an A1c in the recommended range is not enough to prevent some complications, even though it makes them slighly less likely to occur and far less likely to progress to the point where it, say, makes you blind.

So the question in my mind, as I read these studies, is this: if I develop mild retinopathy, does it matter? As long as it doesn't impair our vision, should we care? The majority of type 1 diabetics, even with the best control they are likely to be able to achieve, develop some degree of retinopathy. Detecting retinopathy is of some importance because some types can be treated to prevent vision loss. But is it important to know about retinopathy if what you've got is very unlikely to progress? Why bother testing for the most minor degrees of retinopathy? Why look at "pre-retinopathy"?

Similarly, there's a nerve conduction test that's sensitive for neuropathy. It hurts. So the question is, what's the point of that? After enough years with diabetes, most of us will show up as impaired on a nerve conduction test. If it doesn't bother us, why test it? And if we are symptomatic, well, 80%-90% of us have some neuropathy after twenty years, so why not go ahead and pretend we've alredy done the darn test? Isn't what matters whether I can feel the things I need to feel and that my nerves don't hurt?

There's a part of me that thinks it's interesting that diabetes affects bodies in such difficult to see ways. A part of me that thinks it's neat and worthwhile to know all the ways in which my body is likely to be different from the bodies around me. There's a part of me that hopes that this knowledge could explain some cool things. But I have a large suspicion that the researchers will not use the knowledge that early diabetic changes can be seen in kidney biopsies or that various tests show diabetes in eyes in order to praise the variety of God's creation. I really don't think that's what they have in mind at all.
I figure that what they'll use it for is
to show that the way we
take care of our bodies
is not good enough,
that we need
more medical services
that only they can provide;
more self control
more shame
that we are
different
not as good.
Even if
we thought
we were doing
just fine,
they say it's
not good enough.

So I ask you;
if my eyes see,
are they good enough?
if my kidneys pee,
are they good enough?
if my heart beats,
is it good enough?

Can I get a second opinion!

Is the goal of diabetes treatment,
to make my body just like your?
Is the goal of diabetes treatment,
to make my blood sugar normal?
Or is the goal of diabetes treatment,
to keep me living long and feeling good?

Can I get a second opinion!


FYI, I like my doctors fine and have no diagnosed complications, nor any worth diagnosing.

1 comment:

Laura said...

Nice post!