Would you be surprised to know family members of people with diabetes share similar emotional difficulties as their loved ones? Many health care providers don’t acknowledge the self-blame and anxieties that keep diabetes patients away for years? Enough people report positive experiences with diabetes that it’s leading to a new field of research?
Below are highlights from my talk with Søren Skovlund, global director of patient research and engagement at Novo Nordisk and research director of the company’s DAWN2 (Diabetes Attitudes, Wishes and Needs) study. Above were some of the study’s surprising findings.
Novo Nordisk, the Danish pharmaceutical giant, is one of the world’s largest health care companies and manufacturers of insulin. Its 90-year history has been built on improving the everyday experience and care of people living with diabetes through its services as well as products.
The purpose of the DAWN studies (the first was conducted in 2001) is to help people with diabetes improve their self-management by looking at, and increasing understanding and awareness of, the unmet psycho-social needs of people with diabetes and caregivers. And subsequently, fostering initiatives, policy changes and education to help meet those needs.
Over the weekend at the 73rd Scientific Conference of the American Diabetes Association (ADA), the company released results from their two-year long DAWN2 study.
As an advocate myself of emotional strength and support to self-manage diabetes, oddly, I see an increasing appetite for everything but — for quick and slick fixes.
We salivate over new technology and devices — meters with increasing bells, whistles and download capability, cool iPhone-like looking insulin pumps, greater functionality in mobile health devices, apps and games.
Yet just as in the Hans Christian Andersen tale “The Emperor’s New Clothes,” where no one in the kingdom told the emperor he wasn’t wearing any clothes but for one small child, few acknowledge the emotional component of managing diabetes. Why? It’s murky, messy, ill-defined and hard.
But study after study shows nearly half of the U.S. adult population with diabetes do not achieve the ADA’s recommendation of an A1C less than 7 percent and two-thirds of young people are not meeting their A1C target goal.
Study after study also shows that people do significantly better managing diabetes, and their quality of life improves, with support.
Do we need the best medicines and tools we can get to help us manage diabetes? Absolutely. My point is that you can have access to better medicines and tools and yet do little because you haven’t got the emotional strength, resilience and support to get up every day and manage this chronic condition; you may lack internal resources and/or family, friend, caregiver or peer-support.
Successful diabetes management in my book requires a “MUSE”: Meaningful reason to stay well, Understanding what diabetes is, Skills for lifestyle changes and Emotional strength/support, in addition to medicine and devices.
Here follow highlights from my talk with Dr. Skovlund (pictured at left).
Key and surprising findings of DAWN2
RG: What are the key findings from both the original DAWN study in 2001 and the DAWN2 study?
Søren Skovlund: Both studies confirm the increased psychological burden that people with diabetes face and how significant that burden is in managing diabetes. Simply, you cannot deal with diabetes without also addressing how it affects your life.
We also learned the differences in perception health professionals and people with diabetes hold about what diabetes is and what the challenges are. And, I’m sure you won’t be surprised to know, there’s a communication gap between doctor and patient.
While health professionals report that they ask their patients regularly about how diabetes affects their life, few people with diabetes report that their care team asks them this question or involves them in any other ways, including planning their own treatment.
The good news, however, is we saw that the more people with diabetes feel that those helping them listen to them, the better they do with their diabetes.
One key finding in the first DAWN study that resonated particularly with clinical professionals was what keeps people with Type 2 diabetes from seeking and accepting treatment. Across all countries, fear and denial often keep people from seeking treatment for years. Then when offered treatment they often change doctors or delay.
RG: What other surprises were revealed in the new study?
SS: The fact that there’s a profound emotional burden on family members of a loved one with diabetes, yet so very little is known about it or done about it. We saw this for the first time in DAWN2 because we were evaluating spouses’ and other cohabitating adults’ experience on a larger scale.
DAWN2 shows us that this is an important aspect to address, particularly since this burden can be reduced.
Positive stories yield a new research field
On the positive side, we were surprised by the pocketful of positive, meaningful experiences a quarter to a third of people related about life with diabetes. We have thousands of hopeful, encouraging stories of meaning and inspiration.
DAWN2 researchers are now analyzing and coding thousands of personal stories we collected from four continents to see where people find positive images and turning points in living with diabetes, and we’re very excited about this as a new area of research.
If we can understand how people climb up their mountain of challenges, then maybe we can use these stories therapeutically. So DAWN2 may help us not just look at the burden of diabetes but also how we meet its challenges. And now we have a rich database to offer the global community from which to establish a research field. One we hope may also contribute to other chronic diseases.
RG: How open are health care professionals to changing their behavior?
SS: From our first study to DAWN2, we see greater openness and readiness on the part of healthcare professionals to partner with their patients. There’s a marked positive shift toward valuing patient empowerment and recognizing that the person with diabetes is the expert on his condition just as the professional is an expert in providing support, coaching and knowledge.
We also see the need for people with Type 2 diabetes, particularly, to speak up and get more actively engaged. Many people with Type 2 can be symptom free for years, and since few are cared for by diabetes specialists, they tend not to see their condition as serious or ask questions. Yet while diabetes is clearly serious, with information, hope, reassurance from their doctors, and a team effort, people can live a good and full life with diabetes.
So we need to find effective ways to get people with diabetes engaged, sooner, and sensitize and equip health professionals to respond.
RG: How will the results of DAWN2 be used?
SS: Our next steps are for the national DAWN2 committees to begin to define concrete initiatives relative to emotional support, education and patient involvement that will help improve glycemic control and treatment outcomes in all our participating countries.
Over this year and next, we’ll also be ensuring that the study results are available to scientific publications and then publicly so anyone can apply to the committee to research the data and learn more.
For my 41 years living with diabetes, the last 10 working in the field, I see all too often the emotional toll diabetes extracts. My first book, The ABCs Of Loving Yourself With Diabetes, was expressly written to help readers develop greater emotional strength and resilience to better manage their care.
If you are having difficulty managing your diabetes look for sources of support — family, friends, social media sites, a coach or counselor, and tell your health care team.
Note: In full disclosure, Novo Nordisk has not asked me to write this blog. Personally, I applaud their investment in bringing greater awareness to the psycho-social dimension of living with, and managing, diabetes.
Riva’s new book, Diabetes Do’s How-To’s, is available in print and Kindle, along with her other books, 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It and The ABCs Of Loving Yourself With Diabetes. Riva speaks to patients and health care providers about flourishing with diabetes. Visit her website DiabetesStories.com.
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