[NEHIresearch]

Hi Everyone-

My name is Sarah and I work for a non-profit research organization called the New England Health Care Institute. Our mission is to speed the adoption of valuable technologies so that they can benefit the public sooner, and help contain overall health care costs. All of our research is public and can be found at http://www.nehi.net

Currently, NEHI is researching the potential value of continuous glucose monitors for diabetes. (A device that can give you real-time reading of your glucose, as well as give you information about how fast your blood sugar is decreasing or increasing) We are particularly interested in learning what patients think about this device and how it might impact their lives.

Due to confidentiality laws, doctors, hospitals and even the ADA are unable to refer us to patients that might be interested in being apart of this valuable research. So, we thought we would reach out to a public forum. If any one is interested in answering these questions, we would be thrilled.

We are also interested in conducting telephone patient interviews, so please feel free to e-mail me at sspurgeon@nehi.net if you are interested in being apart of this research. We've had insight from experts around the country--now we want to hear the patient's view.

If you would prefer answering via message board, that would be helpful too. We don't need any names-- just your age, age of diagnosis, and treatment.

Age:
Age of Diagnosis:
Current Treatment:

Questions for Patients


1.) What are some of the daily challenges you face in managing your diabetes?


2.) How do you currently manage and monitor your blood sugar level?


3.) Is your current glycemic control as good as you would like it to be?


4.) Would you find it useful to see frequent, real-time reading of your blood glucose level as well as the rate direction it is moving (increasing or decreasing) and rate of that
change?


Thank you very much for your help.

[lgvincent]

I would like to have a continuous reading of blood glucose. The only thing I'm aware of right now is the GlucoWatch and it's too expensive for me. Of course, I've also heard they aren't very accurate so I don't know how valuable the readings you get from them are.

[LauRa Lu]

Originally posted by lgvincent
I would like to have a continuous reading of blood glucose.

Agreed!

[rzrbks]

lgvincent

I would like to have a continuous reading of blood glucose.

That's a bus I Would Ride, Fore Shore, ya betcha

[Shalyndria]

Hi Sarah, welcome to the Forums. FYI I've moved your post into the Monitoring section as it is more appropriate to your subject.

Hmm a device that gives real time readings and also information about how fast BG's are in/decreasing?? Wow that sounds great! Where do I sign up? :p

Answers for Sarah:
Age:24
Age of Dx: 11
Current Tx: Insulin pump therapy

1) Anything from getting dressed (ever put the pump on the bureau while dressing and hooked the tubing with your elbow?? Not a pretty sight!), to affording the cost of test strips and infusion sets etc. etc.
2) You might want to clarify this question. I could say I test on average 10x a day, I could say I monitor it very well, I could say I use the Freestyle Flash to monitor.
3) I'm a perfectionist; nothing's ever as good as I want it to be :p Seriously though, there's always room for improvement.
4) Yes, YES, and YES!!!

Looks like we need a Forum bus
Shy

[HeatherP]

Age of diagnosis: 24 (T1 for 13 years now)
Treatment: 6 shots/day Humalog, Lantus & NPH

1. Working at balancing food and blood sugars, keeping w/i my
target range.

2. Flash meter, test 7 + times/day

3. I would like to be able to maintain lower levels w/o hypos, but
currently I find that difficult.

4. A way to continually monitor b/s would be great - especially if
it were non-invasive! We've heard of tattoos, microchips etc.

HeatherP

[MarkMunday]

Age: 47
Age of Diagnosis: 21 (T1)
Current Treatment: MDI - Lantus + Humalog

1.) What are some of the daily challenges you face in managing your diabetes?

The main challenge is keeping blood sugars between 4 and 9. That breaks down into two steps. Undestanding/working-around the basal action of Lantus, and bolusing at the right time and in the right amounts.

2.) How do you currently manage and monitor your blood sugar level?

Test about 10 times a day currently (am getting new insulin regimen settled in). Use Accu-Chek Advantage meter. Analyse results with Compass software on PC. Take corrective action (eat carbs or inject Humalog) if and when required.

3.) Is your current glycemic control as good as you would like it to be?

It could be better. Timeous access to relevant information is the biggest constraint.

4.) Would you find it useful to see frequent, real-time reading of your blood glucose level as well as the rate direction it is moving (increasing or decreasing) and rate of that change?

Absolutely. Being able to see exactly what is happening in real time would shorten the decision making cycle and give me total control over managing blood sugar levels.

[am1977]

I'd like to help you out as well...so here it goes

age:27
Diagnosis age 24
Diabetic Type 1

1. There are so many challenges dealing with Diabetes, it's hard to narrow it down, but I'll try. I agree with Mark. I struggle everyday to keep my blood sugar within an acceptable range. Also, having to deal with multiple injections a day, dealing with the expense of the disease, and problems with following a diet and trying to lose weight.

2. I am on MDI as well of Lantus and Humalog. Prior to this I was on an insulin pump. I currently take about 5 to 6 shots a day in my attempts to achieve tight control I also test about 5 to 6 times a day as well. Not to mention working out nearly everyday in the gym, and watching my diet.

3. No, I don't think my control will ever be what I want it to be...I'm like Shy in that regard. The last few months have been especially tough for me due to more unexplained high blood sugars. I 'd like to see my blood sugar become more regulated and on a more even level with less fluctuations..

4. I would love to have something that gives me frequent readings of my blood sugar in real time. I think the key to blood sugar control is frequent testing and being able to correct any highs and lows.

Hope this helps you

[KLD]

I will answer your questions, too, Sarah, because my situation is a little different from that of many of the members of this form, the reason being that I control my diabetes very tightly with a low carbohydrate diet.

Age: 61
Age of Diagnosis: 54
Current Treatment: low carbohydrate diet only

Questions for Patients


1.) What are some of the daily challenges you face in managing your diabetes?

Once I became accustomed to the complete change in eating habits, I don't have any particular challenges managing my diabetes. It was difficult getting over my carb cravings for a few weeks, but they soon disappeared, and for the past two years, I have thoroughly enjoyed this way of eating.

2.) How do you currently manage and monitor your blood sugar level?

I keep very tight control, testing seven times a day: a fasting test first thing in the morning, before every meal, two hours after every meal, and before going to bed. Occasionally, if I'm trying a new food, I do a series of extra tests, every 20 minutes for three hours following my meal.

3.) Is your current glycemic control as good as you would like it to be?

It is excellent. My blood tests range between a fasting level of 4 (72) and a high of 5.5 (99) maximum two hours post prandial. My last A1C wwas 5.2.

4.) Would you find it useful to see frequent, real-time reading of your blood glucose level as well as the rate direction it is moving (increasing or decreasing) and rate of that
change?

I would find it very helpful, because my test results are an important part of my successful control, partly because they serve as an incentive - knowing that if I "cheat" the results will show up immediately on my meter - and partly because my pre-meal readings serve as a guide as to what I'm going to eat and how much I'm going to eat.

Karen

[NEHIresearch]

Hi Everyone-

Thank you so much for your input-

We got a great response, so we won't be contacting any more people directly via phone. Do keep posting any thoughts you might have. We are particularly interested in hearing from those that have Type 2 diabetes, as this group has been relatively quite thus far.

Thank you and best wishes for continued control!

Sarah

[BeadieJay]

I'm Type 2, so thought I'd reply, as you're looking for more comments from 2er's!

Age: 45
Age of Diagnosis: 45
Current Treatment: Metformin 2000mg per day

Questions for Patients


1.) What are some of the daily challenges you face in managing your diabetes?

I was only diagnosed 15th June 2004, so I am very much in the learning phase of things at the moment. However, the biggest challenge is learning what foods I can eat in order to keep my sugar levels down. To begin with I received a lot of very conflicting information, which was depressing - because I wanted to know everything immediately. Thanks to this forum and others, I've learnt so much more than my doctor has been able to tell me...and I'm gradually learning what foods work for me, and which ones to avoid. I'm aiming for a low carb lifestyle, but not as strict as the one that KLD (Karen) follows.


2.) How do you currently manage and monitor your blood sugar level?

My GP didn't want me to self-test, but I realised very early on that it was the best way for me to see what foods I could and couldn't eat. I use a One Touch Ultra Monitor and test 3 to 5 times a day. I hate testing - sometimes I find it physically impossible to stick the needle in myself, so there have been days when I've not tested at all. I still haven't established a routine that I'm happy with, in terms of how often I test each day. Ideally I would like to test before and after every meal.

3.) Is your current glycemic control as good as you would like it to be?

No, but then it's still early days. I'm due to have another HbA1c next month, and hope to see a significant decrease - but I know that I've still got a long way to go.

4.) Would you find it useful to see frequent, real-time reading of your blood glucose level as well as the rate direction it is moving (increasing or decreasing) and rate of that change?

Most definitely - especially if it didn't hurt (LOL). Seriously, I think that would be the ideal way to monitor bgl's.

I'm in England - if you do develop a continuous glucose monitor, please could you make sure they find their way across the Atlantic!!

many thanks

[lgvincent]

Well, I'll be darn! I struck out again! My strike-out record is still intact and going strong!! (Would be nice to bring this record to an end.)

[BeadieJay]

what do you mean Lowell?

[koblenz]

Age: 35
Age of Diagnosis: 35
Current Treatment: Type 1. 4 Injections per day, 3 Novolog, 1 Lantus. About to go on pump (crossed fingers)


1.) What are some of the daily challenges you face in managing your diabetes?

I am pretty new at this, so the biggest challenge is the learning curve. Soooooo much to learn when you want to take charge and gain good control. Another problem is learning a new schedule in life. Right now it is planning every day around MDI and eating. Also, having to think about and plan what I eat; never thought I would say that.

2.) How do you currently manage and monitor your blood sugar level?

Freestyle meter, 6 times a day. MDI, 4 times a day. Record all results in a palm program I wrote, automatically upload to web site. Endo and CDE check my site about every 2 weeks and send tips and instructions. They ROCK!


3.) Is your current glycemic control as good as you would like it to be?

I would have to say no, because I would like it to be perfect. Now that said, I realize there is no such thing as perfect control. In time I will learn what works and what doesn't and adjust accordingly. But for now, I try not to get bummed out by the occasional high or low.


4.) Would you find it useful to see frequent, real-time reading of your blood glucose level as well as the rate direction it is moving (increasing or decreasing) and rate of that change?

For me, right now, I don't think so. I would be a nervous wreck and "chase the wheel" as my endo puts it (want to eat less on one low spike or want to give more insulin on one high). As I learn more about what I am doing and what things mean, I think it would be a great tool to monitor, evaluate, and adjust!

Come back and post updates on the progress if you can, I would be very interested!

[buzzborne]

Age: 18
Age of Diagnosis: 11
Current Treatment: Type 1 4 daily injections, 3 novorapid at meals, 1 lantus at bed

Questions for Patients


1.) What are some of the daily challenges you face in managing your diabetes?

At the moment, trying to keep my blood sugars constant, and at a good level...


2.) How do you currently manage and monitor your blood sugar level?

I use the accu-check compact blood glucose machine... when I say I use... I mean that I have only just really started testing again, I went through a stage not testing at all... but I now nearly testing up to 4 times a day.. trying to do more so can keep a close eye on my sugars.


3.) Is your current glycemic control as good as you would like it to be?

No, but I am trying hard to get it to be in control and the start of that is actually me testing again...

4.) Would you find it useful to see frequent, real-time reading of your blood glucose level as well as the rate direction it is moving (increasing or decreasing) and rate of that
change?

Yes, I think that it would be of great benefit, and hopefully make overall control a whole lot better...! As BeadieJay mentioned, can it please be brought across the atlantic!!