In 2001, Novo Nordisk partnered with the International Diabetes Federation (IDF) and a panel of experts and patient advocates to study perceptions about diabetes and better understand the psychosocial aspects and how they affect diabetes management. The DAWN Study (Diabetes Attitudes, Wishes, and Needs) was the largest study of its kind, and was ground-breaking in shedding light on where people felt communication fell short with healthcare providers and how stress impacted their diabetes management.
At the AADE conference in August, Martha Mitchell Funnell, MS, RN, CDE, and associate research scientist at the University of Michigan Medical School, gave a presentation called “A Decade of Progress towards a New DAWN in Diabetes.” Ten years after the DAWN Study, there were still many needs to be met. Patient-centered healthcare had become a buzzword, and the numbers of people being diagnosed were growing. DAWN2 provided new evidence on a global level about the need to develop long-term change for how we talk about and treat diabetes. What is at the heart of patient-centered care? Empathy. Truly listening to patients and helping them to find the best solutions for their issues lies at the heart of it. Addressing psychosocial issues and providing access to educational resources, along with building a strong collaborative team of healthcare professionals and family members, is a central theme in the DAWN Study.
How big was the original study in 2001?
- 5,426 adults with diabetes
- 2,194 primary care physicians
- 556 specialists (endocrinologists, diabetologists)
- 1,122 nurses (specialist and general)
- The people with diabetes interviewed were self-classified as 50% Type 1 and 50% Type 2.
- The 13 countries involved were: Australia, Denmark, France, Germany, India, Japan, The Netherlands, Norway, Poland, Sweden, Spain, UK, and USA.
The results showed from the first study showed emotional well-being is a vital part of diabetes care, and there was a perception among patients that healthcare providers didn’t function as a team—more communication was needed overall, and more resources for emotional help needed to be available. 85% reported distress at diagnosis, and 43% said they continued to feel extreme distress 15 years later.
When the new study was being developed, one of the goals was to make stronger connections—locally, nationally, and globally—in order to find new opportunities to share data and explore ways to offer better care. Access to healthcare, any barriers people experienced, and establishing benchmarks for quality of life and access to self-management education were at the center of these goals.
In 2011, the new study’s reach was much larger—there were 15,438 respondents across 17 countries:
- 8,596 adults with diabetes
- 2,057 family members
- 4,785 healthcare providers, which included physicians, diabetes specialists, nurses, and dieticians
Building on the goals of the original study, DAWN2 reviewed community resources and societal attitudes as well as emotional support and future needs based on the increasing number of people being diagnosed.
Results showed a widespread difference in perspectives. 24% of people with diabetes reported having been asked about how diabetes affects their lives, but 52% of healthcare providers said they asked patients how diabetes affects their lives. People felt their lives were affected across many areas: their physical health and emotional well-being, work and school, finances, hobbies, and relationships with family and friends.
40% of family members reported feeling high levels of stress themselves. 46% wanted to be more involved in helping the people with diabetes (PWD) in their lives, and 37% didn’t know how best to help. With the growth of online communities in the social media sphere, more resources have become available, but it’s also a matter of healthcare providers being aware of them and adding them to lists of existing resources that are available.
Currently, nearly 50% of PWDs and 23% of their family members participate in educational programs for diabetes management. Most people in those groups found it very helpful, but still found room for improvement, particularly around coping with the emotional aspects of it. And many healthcare providers want more training in diabetes care as well, with 51% wanting more training in nutrition, 50% wanting help in teaching self-management, and 59% wanting to know more about the psychological aspects of living with diabetes.
“DAWN2 reminds how much progress we have made and how much there is left to do,” said Ms. Funnell. “Everyone involved with diabetes has a role to play in making true patient-centered care a reality.”
At the center of all of this is increased communication and empathy, and knowing which resources are available. Here at T1D Exchange and Glu, these issues have been part of our mission. The power of peer support is in your comments, and the experts we partner with are grateful for your participation in surveys to help them create better solutions. While at the AADE conference this summer, it was heartening to see so much of our data shared with the nearly 3,000 educators and healthcare professionals who were there. We look forward to returning to AADE next year, and when we do, we want to bring your questions with us. What topics do you want to learn more about?
Want to find out more? Check out these helpful resources:
Results of 2011 DAWN Study (with breakdowns by participating countries)