Clinical targets and the impact of always moving the target
Has anyone figured out if we are supposed to eat eggs or not? How about Coffee? Should I be getting more sun for vitamin D activation or less to prevent skin cancer? The pendulum of wellness recommendations can be, at best, confounding. Even as a nurse, just trying to keep up with recommendations I start to feel like Charlie Brown lining up for the kick only to have the ball yanked away! In Diabetes, perhaps more than any other disease we live our lives guided by targets. What is the long-term impact of this constant moving of the target?
Recently we saw YET AGAIN a change in A1C recommendations for children handed down from the American Diabetes Association.
This time a change from the long-held (since 2018) target of A1C below 7.5 for kids, down to getting below a 7.(back in 2005 targets for kids under 6 were 7.5-8.5; 6-12 years under 8, and 13-19 under7.5) Since the 1993 Diabetes Control and Complications trial (DCCT) we have been thrown a constant barrage of blood sugar management targets. These are based on studies that correlate clinical indicators and the most common clinical indicator has always been A1C and risks of diabetes related complications (primarily retinopathy, lower limb amputations and nephropathy) vs incidence of severe hypoglycemia to strike a middle ground where we have the most benefit of complication reduction, with the least cost of severe hypoglycemia. But why these clinical markers? and why these complications and what about EVERYTHING ELSE?! Part of the story was not having data. For decades we haven’t had CGM data on the vast population of people living with diabetes. A1C values were the only values we could gather in quantities large enough for statistical significance. And complications were chosen based on their cost to the community in both medical care as well as loss of life. So here we have the core of the problem. Targets have, for decades, been driven to give clinicians a statistically significant target to aim for; to reduce the cost burden of diabetes on society. These targets never were, and never could be, about what is best for any one person’s life. They were never about keeping little Billy healthy or little Susie living her best life. They were never about how to make sure John Smith lived to see his grand kids grow up, or to make sure Jane Doe had a healthy pregnancy. They are vast arbitrary markers for a population at large.
In fact, these ever-changing markers can be really harmful for us as people living with diabetes. Say you’re a teenager or parent of a young child and Just before the holidays you got your A1C! lowest ever y 7.1!!!! Congrats!!! You did it!! You beat the odds and got your blood sugar management under the target A1C (something less than 70% of people with diabetes achieve by the way). Now here comes the ADA with their new target, under 7. The message to that teen? Not good enough anymore! Time to keep striving to meet our benchmark! Time to go back to being “not good enough for healthy”. What’s the message to that caregiver? Time to push harder, risk more hypos, back to the sleepless nights and buying juice boxes in bulk! Because the target just dropped! Meanwhile, as adults we see targets for people with type 1 drop, but targets for people with type 2 increase?! What is that about?! Does A1C matter or not?! As we discussed in our Newsletter last week, it turns out that that A1C may be less significant than we thought in complication risks and that insulin resistance, time in range and standard of deviation have all been shown to be far more impactful!
Even more insidious is the use of A1C to further stigmatize and isolate racial minorities. These populations are often pointed out as having lower rates of reaching established clinical goals. These goals are being made without regard for available resources or health care disparities. And guess what, more money gets given to healthcare systems that reach goals, meaning the gulf will continue to widen. Our culture tells us that anyone not reaching for the goal is either a failure or negligent. But the reality is that the message many minorities and underserved populations are getting is that they have not reached the goal, and they never will because no matter how close they get, someone will just move the finish line. Those privileged and uncaring powers that have made wealth, higher education, and other “goals” out of reach continue to make “healthy” out of reach as well.
A1C targets are quicky being outdated and shown for what they are, statistical and monetary metrics and little more. Those who sit on high with stacks of studies can name them and change them but are they helping us, as people living with diabetes by doing this? Their clinical guidelines and targets are not making us healthier, we are not meeting those targets, we are not seeing massive reductions in complications, we are not seeing revolutions in the ways diabetes is managed or paid for. These ever-changing targets weaken our psychological and emotional health, give us a false sense of security when we meet them and frustrate and shame us when we don’t.
So, what can we do? We can change the discussion. We can demand that A1C alone no longer be the standard by which we as individuals are held to task, but that MY goals and YOUR goals be looked at individually by our prescribers, our supports, our educators, and yes even our administrators and insurers! We can demand that our goals be based on our individual needs, desires, values, abilities, and resources. We can take the A1C idols off their shelves and replace them with our personal holistic wellness. We can stop touting our numbers like trophies and subtly putting down others who have not reached OUR goals, as if they mattered to them in the first place. We can take the lead in destroying this culture of putting pass and fail numbers on everything about diabetes life, and instead we can support and encourage one another. We can educate and empower one another. Then we can see places of need and disparities that we can work to meet when people are people, and no longer sets of data.
Here at IDS we stay informed on studies, trends, and indicators that can help us guide ourselves and our clients to reach wellness. Sometimes that can be quantified, sometimes it can’t. Often the ideal goal for one person would be harmful for another. The clinical practice standard at IDS is the individual. Patient-centered care is not a new healthcare trend here, it is the only way we have ever viewed diabetes management, and study data is not likely to change that anytime soon.
…to add to my comment above, regardless of the percentage of people meeting the “recommended goals” your points are all right on!
May I share this article (via link) with a couple of the online T1D support groups I’m a member of?
HI Carol, always feel free to share our articles with anyone who can be helped by them
Hi Alicia, thanks so much for this article. It really hits the nail on the head. I was surprised to see that “less than 70% of people with Diabetes achieve the recommended A1c goal”… that’s not so bad. I thought it was more like the other way around (less than 30% of people with Diabetes achieve the recommended A1c goals).