CHICAGO — Almost 70% of adults with type 1 diabetes never use their blood glucose self-monitoring devices, insulin pumps, or continuous glucose monitors (CGMs) to download historical data about their blood glucose levels and insulin doses.

The results, from a new survey of 155 adults, showed that only 12% of respondents regularly review their past data at home, Jenise C. Wong, MD, PhD, from the division of endocrinology, department of pediatrics, University of California, San Francisco, told a press briefing here at ICE/ENDO 2014. Such information, she said, might help patients to manage their diabetes better.

Dr. Wong likened the exercise to monitoring credit-card spending habits. "Most of us do this real-time, we use our credit cards to make purchases every day. But to better understand [our spending patterns], we would need to retrospectively review our credit-card bill," she explained.

The reasons people cited for failing to review their historical data from diabetes devices were varied, ranging from their saying that their providers did not encourage it or that they did not know they could do this to not being bothered or to it's being difficult to handle the technical aspects of it, she said.

And "even among the 12% of patients who did frequently review their data, they did not have better glucose control after multivariate adjustment for confounders," she added. This suggests that they are having trouble translating the information into practical advice. "It's just a list of numbers, so we need better tools...to make the data more meaningful and more actionable so we can make a difference."

The moderator of the press conference, Joanna Spencer-Segal, MD, PhD, a fellow in the department of metabolism, endocrinology and diabetes at the University of Michigan, Ann Arbor, told Medscape Medical News that she was not particularly surprised by the findings of the study.

"This is a really complex issue that we encounter in clinical care. These retrospective data are used by providers, this is how we help our patients achieve better glycemic control, and we train for years before we feel comfortable acting on retrospective data," she observed.

"So [Dr. Wong's] point about not only having patients download the data but giving them the tools to know what to do with it is really going to be the key to making a difference in their control."

In normal clinical practice, Dr. Spencer-Segal said that diabetes educators usually keep in close contact with patients between appointments. "So there are a lot of things a patient can do with data once they download it. They could act on it themselves ― sometimes they do that appropriately, and sometimes they don't. And/or they could send it to their educator, and their educator could help them, or they send it to their MD."

So "once we have patients downloading their data, [we have to find out] if they are making appropriate decisions based on it," she cautioned.

Would an App Help? Not Yet

Dr. Wong was asked in the press conference whether an "app" for a smartphone would help. And whether there was one she could currently recommend.

"There are a lot of apps out there for diabetes, hundreds," Dr. Wong replied, "but you have to enter in your blood sugar and [physical]-activity levels, and I think that's a big barrier." There are also healthcare providers who recommend some apps that help with carbohydrate counting, she noted.

"But I don't recommend anything right now, the apps [we have] require that patients do too much. They need something to take data from their devices and help them incorporate it into daily life."

To Medscape Medical News, Dr. Spencer-Segal said: "These are complex decisions, so an app making an appropriate decision is a leap, but we could get there."

Users of CGM More Likely to Download and Review Data

Dr. Wong and her team decided to conduct their survey because, she explained, it is not known how frequently people with type 1 diabetes retrospectively review their own data between clinic visits.

In her study, 154 adults with type 1 diabetes responded to the survey. The mean age of the patients was 34 years. About half were male, and 66% were white. Nearly all patients used a glucose meter, and many used more than 1 device. Of the respondents, 106 individuals used an insulin pump, which either communicated with a glucose meter or allowed the user to manually enter glucose values from a glucose meter, and 43 used CGMs.

"Downloaders" were defined as those who downloaded data 4 times a year or more; "reviewers" were defined as people who looked at their data 50% or more of the times they downloaded (as opposed to simply downloading and giving the data to a provider without self-review).

Only 31% of survey respondents (48 of 154) said that they had ever downloaded past data from their devices at home, and even fewer, just 18 of the 154 participants, did so 4 times a year or more and actually read the information before giving it to their healthcare provider.

Users of CGMs, however, did more regularly download and review their data more often than users of other devices: 28% vs 5% to 7%. And older adults were more likely to download historical data, Dr. Wong said.

But even the 12% who did download and review their data did not have any better glycemic control, in terms of HbA1c levels, than those who did not, she added.

There was about a 1% difference in HbA1c levels between the 12% who did download and review their data and the remainder who did not, but this disappeared on multivariate analysis. Dr. Wong said that this could be just a problem of statistical power. "It's possible that in a larger study, we might see better glycemic control, so that's something we are thinking about."

Download/Review Better Among Parents of Type 1 Patients

Following Dr. Wong's presentation to the meeting, session chair Andrea Kelly, MD, MSCE, a pediatric endocrinologist, inquired as to whether she thought parents of children with type 1 diabetes would be more proactive in this regard. Dr. Wong said they were, but there were caveats.

She said she presented a similar study at the American Diabetes Association 2014 Scientific Sessions last week, in which they surveyed the parents of children with type 1 diabetes to see how often they were looking at historical data from diabetes devices.

"The numbers are a little bit better, so more parents are doing this, but still it's low," she noted, with 50% of parents of pump users downloading data at least once a year.

"And when you look at frequency of review, it's still only about a quarter who do this frequently and review it. Maybe they send it off to their doctor, and their doctor will review it for them, but then the problem is, 'Okay, as the caregiver working with the parent, that's one thing, but when does the child actually ever learn?' "

"I think it's an issue of transition as well ― you go from the parent working with the provider to, 'Okay, now you are on your own, now you have to know what to do with this condition by yourself.' "

In conclusion, Dr. Wong said it is obvious that "collecting and viewing data is not enough. Patients need proper tools and knowledge of what to do with the data." This will require better hardware, software, and education, she said.

Dr. Wong and Dr. Spencer-Segal reported no relevant financial relationships.

Joint Meeting of the International Society of Endocrinology and the Endocrine Society: ICE/ENDO 2014; June 22, 2014. Abstract OR26-5

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