Tuesday, February 10, 2015

The Question That We All Should Be Asking

Diabetes.  Education.  Everyday. #C3N

This morning I was offered the delightful opportunity to share some valuable T1d parenting insight with our clinic shareholders.  This particular group was made up of pediatric endocrinology doctors, researchers, clinicians, CDEs, nurses and parents.  

I say it was delightful because without a doubt, part of what has made our lives better is the idea that WE - the patients and caregivers - now have an opportunity to be heard.  (insert pure adulation at seeing our people working on this important endeavor!)  Each time an opportunity like this presents itself, I am THERE, smiling, nodding, encouraging and also offering a view from the perspective of parent.

My take-a-way from this particular meeting was the complex way our various clinic shareholders view measurement of success for diabetes care management.  As ideas flowed, two specific examples emerged from the clinic side.

1.)  The number of blood glucose checks performed daily.

2.)  The A1c.

Now, before I go any further, I want you to ask this question to your child, spouse or loved one living type 1 diabetes:

What is YOUR measurement of success for Type 1 Diabetes care?

********   SPOILER ALERT!!! ************   

To keep this question from being swayed by the next few paragraphs, only after you have asked the question, continue on.  I would also love to hear your response, so please feel free to add into our comments or leave a message on the Naturally Sweet Sisters Facebook page.  

As the number of blood sugar checks and the A1c were discussed as measurements of successful T1d care, myself and the other parent in the group, immediately raised concerns.  

How many teenagers want to test the number of times recommended?  Will we be setting kids up for failure before they start?  What happens to the measure for the patient utilizing CGM?  In addition, focusing on the A1c is only part of the picture.  A huge part of my blog is the reassurance to parents that the A1c is simply one snapshot in time.  There is no association with the million things that a family dealt with over a three month period.  

The reality is that people are more than numbers.  

Later in the day and long after the clinic meeting was over, I cajoled both daughters into driving with me to the neighborhood grocery store.  As we pushed our shopping cart around while perusing veggies (second best place for open discussion, next to being held hostage in the family car!) , I casually asked the above question.  

"How do you measure if you are successful in your T1d management?"

Without hesitation, oldest daughter immediately said, "I know I am successful when I get to do anything that I want and there is no limit.  Like when I want to go to a friend's house and you tell me to go ahead.  All you say is to make sure that I text you and dose (bolus) for my snacks.  When I am 500 mg/dl, I CAN'T do that.  Not even just because you won't let me but because I feel like crap."

A moment later and youngest daughter said, "For me, I know it is good when you tell me that.  When we were at the doctor's office and you said, 'good job' and then, Dr. S. said, 'Way to go!', that's when I feel like I am doing a good job.  I really just need to hear it from you."

Interesting, isn't it?

Clearly this is a major paradigm shift for both the patient and the provider.  

However this is also an OPPORTUNITY to develop a better, more thoughtful, patient-centered clinic.  

It all starts with some dialogue.  Let's keep it going!  

1 comment:

Need A Nap2 said...

#1 my daughter's insurance wouldn't pay for CGM, #2 my daughter doesn't want a CGM. There can be a big range in blood sugar #s between checks and a lot of it can be due to hormones especially growth hormones. I think that's hard for teens, to judge based on an a1C is unfair. What I like to see is 100% bolusing (sometimes my daughter forgets at meals)! :)

There was an adult my husband talked to, his blood sugar #s were great but his a1C was high. He tried a CGM and found that overnight his blood sugar was going high. After some changes to his basal rates, his a1C was much better. I really think diabetes takes detective work and good resources.