Diabetes survey finds distress and lack of support remain barriers

Findings from the 2016 National Diabetes Education Program (NDEP) National Diabetes Survey (NNDS) suggest that there have been improvements in diabetes-related knowledge and behaviors among U.S. adults, but significant gaps remain. Diabetes distress and a lack of self-management support remain issues.

The 2016 survey included adults ≥35 years of age in the US. There were 2,517 respondents in 2016; completion rate was 46%. Survey results represent four groups of people: people with diabetes (PWD), people with prediabetes (PWP), people at risk of diabetes (PAR), and people at lower risk (All Others, or AO). Of the respondents with diabetes, 83% reported having type 2 diabetes, 10% reported having type 1 diabetes, and 7% were unsure of their type or refused to answer.

The Chair of the NDEP, Ms. Sue Kirkman, MD told Diabetes Voice, “The survey shows that we are making progress in terms of public and patient awareness of diabetes and its complications. However, many people with diabetes are not confident in their self-management skills, and report high levels of diabetes distress. We need to move beyond merely providing education, and incorporate strategies and systems that support people in their daily lives.”

Awareness of diabetes complications

The survey asked respondents to indicate which were the three most serious problems caused by diabetes. Respondents were most likely to select “death” (63%), “amputation, loss of foot or leg” (54%), and “blindness” (51%). Combining responses for “stroke” and “heart attack, heart condition, heart disease” into one category did not improve the relative ranking for CVD. The proportion of respondents selecting a CVD outcome did not increase significantly from 2014 to 2016 (73 and 75% of respondents, respectively).  See Figure below.

Healthcare Access

Approximately 93% of 2016 NNDS respondents reported having health insurance that paid for all or part of their medical care. This rate had increased from 2014 (89%). Oddly, this figure doesn’t seem to accurately reflect the US prescription drug affordability crisis, especially the high cost of insulin (for the insured and uninsured), which many Americans face today.

Diabetes Distress and self-management support

The majority of PWD reported some level of distress (rating of 2–5). Two-thirds of respondents (62%) report distress from demands of “living with diabetes”, 60% from their “diabetes routine”, and 69% from “possible long-term complications”. Distress ratings in each of the three areas did not change much from 2014 to 2016.

More attention needs to be given to diabetes self- management support and education (DSMES). Most PWD reported not feeling totally self-confident in managing either hyper- or hypoglycemia (65% and 60%, respectively), and 60–69% reported some diabetes-related distress. Only 62% of PWD reported receiving “advice or counselling about diabetes management” in the past year.

One of the most fascinating findings from respondents was the limited use of technology for self-management support. Paper calendars, diaries, or journals to track diabetes-related activities were most frequently used by 36% of PWD; 12% use electronic tools such as apps; health or diabetes websites by 11%, and videos by 6%. When asked specifically about social media use (such as Facebook and Twitter), 3% of PWD reported using it “often” and 15% reported “only once in a while.”

Perceptions of type 2 risk and prevention

Risk awareness has slowed down, or prediabetes is mitigating risk perception. The proportion of survey respondents without diabetes (PWP, PAR, and AO) who felt they could develop type 2 diabetes had increased from 2011 (30%) to 2014 (42%). Increase in risk awareness from 2014 (42%) to 2016 (45%) but is not statistically significant.

People with prediabetes were more likely to take action to reduce their risk of developing type 2 diabetes (71%) than PAR (52%) or AO (43%). The three most commonly reported activities were weight loss or weight management, reducing calories or portions, and walking for exercise.  For people without diabetes, 16% reported they received advice or counselling (in the past 12 months) about how to prevent type 2 diabetes, 45% for PWP, and significantly lower (11%) for PAR.  This is an area for more concerted effort.

Conclusions

The report concludes and acknowledges more work needs to be done for people at risk for or living with diabetes in the US. “As healthcare professionals, what can we glean from this data? Ongoing outreach and educational efforts have made progress in increasing knowledge about diabetes and diabetes risk. However, the public’s need for education and support in diabetes prevention and care remains urgent,” said Dr. Kirkman.

More specifically, awareness of the strong link between diabetes and CVD needs greater awareness. DSMES remains underutilized, and many people with diabetes need greater support to deal with hyper- and hypoglycemia and find ways to deal with diabetes-related distress. Population awareness of risk of type 2 diabetes continues to rise but more of the estimated 33.9% of those with prediabetes need to become more aware of diabetes through screening and education.

NDEP works collaboratively with its partners at the federal, state, and local levels to improve the treatment and outcomes for people with diabetes, promote early diagnosis, and prevent or delay the onset of type 2 diabetes.

The National Diabetes Education Program (NDEP), founded in 1997, is a federally sponsored initiative of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health and the Centers for Disease Control and Prevention to improve diabetes management and outcomes, promote early diagnosis, and prevent or delay the onset of diabetes in the United States.

View the full report:  Findings from a National Diabetes Survey: Highlighting Progress and Opportunities for Diabetes Prevention and Care.