More rage against research

From the WSJ:

In 2006, Washington created a board to scrutinize the cost-effectiveness of various surgeries and treatments, known as the Health Technology Assessment program. At a hearing today, the panel will debate glucose monitoring for diabetic children under 18. In other words, the board is targeting the fundamental standard of diabetes care that has been the established medical consensus for at least three decades.

Let’s start with the facts. Regardless of what the WSJ thinks, our care of children with diabetes is sub-optimal. Part of the problem is that even a perfectly well controlled child with diabetes often has wildly fluctuating glucose values, likely due to hormonal changes during development and puberty. Testing also sucks. It’s painful, it’s intrusive, and it’s often stigmatizing. Moreover, children with diabetes naturally rebel against their parents as they try and establish independence. Control of diabetes – especially testing – becomes the means by which adolescents sometimes establish their independence. It’s a mess. If you would like to know more, please read any of the many studies I’ve done on this topic.

So it’s not crazy, once in a while, to question whether what we are doing is right. If all this testing and fighting isn’t making things better, then maybe we might want to stop. There doesn’t have to be an evil reason to conduct a literature review of the efficacy of testing. I’d be all for it, if not just to maybe see if there isn’t a better way. The cost is irrelevant.

Here’s more:

Diabetes affects the body’s secretion of insulin, the hormone that metabolizes sugar, and most kids with type 1 diabetes take multiple daily insulin injections or use insulin pumps. The best way to manage this chronic disease is with frequent self-monitoring and then calibrating the insulin dose to current blood-sugar levels. Patients do so either with finger sticks that are read by an electronic meter or continuous glucose monitors that track blood sugar levels virtually in real time.

The Health Technology Assessment has homed in on both technologies, claiming that the “effectiveness and optimal frequency of self-monitoring of blood glucose in patients is controversial.” Not among physicians. But in a recent report, the panel suggests that there isn’t enough “evidence” to support monitoring among childhood and adolescent diabetics, and that the randomized controlled trials that have been conducted aren’t high quality.

Here’s the thing. Almost all the research cited above is on adults. And children are not just “little adults”. They act differently, they have to be approached differently, and their body chemistry works differently. What is great for adults is not often great for children. Sometimes we need to do research on children, too.

I come at this from experience. When I began my work in the area, I assumed that better technology was the answer. But after lots of work talking to adolescents with diabetes and their parents, it turns out that better communication may be more important than technology. Or, technology that improves communication may be helpful. I’m not convinced that testing in and of itself is necessarily the answer.

But we won’t know that without research! We won’t know that if we don’t check. And if every attempt to review the literature is met with cries of RATIONING and DEATH PANELS then things will never get better.

I swear to you, I work in a world with people of all political affiliations. I know doctors way more liberal and way more conservative than I. I know researchers on both sides, too. And somehow, we’ve all managed to do our jobs and care for patients and try to improve things without questioning each other’s political motives. In my work with children with diabetes, looking at improving glucose self-monitoring and outcomes, I’ve never once had a political discussion or debate. I really wish we could keep it that way.

One final point. Back to the WSJ:

But the Health Technology Assessment is an example of how comparative effectiveness will work in the real world, as the political system tries to find ways to restrict or limit treatment to control entitlement spending.

Last I checked, there seemed to be a lot of support even from those opposed to CER for control of entitlement spending. There are two ways to do that. The first is to try and figure out what doesn’t work and spend less on that; the other is to spend less on everything, good or bad. I’d choose the former. I’m not sure why the latter would be preferable, but if we refuse to think about this, that’s what we’ll get.

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