International DAWN2 Study Reveals Emotional, Family Burdens of Diabetes
High emotional toll seen in both patients and families
Almost half of people with diabetes feel “significant emotional distress” related to their disease, according to preliminary data from the global Diabetes Attitudes, Wishes and Needs 2 (DAWN2) study. The study highlights issues such as discrimination, fear of complications, and impact on quality of life—especially related to patients’ medication routines, according to presentations at the 73rd Scientific Sessions of the American Diabetes Association, held in Chicago.
The DAWN2 study is a follow-up to the 2001 DAWN study. In DAWN2, 15,438 participants from 17 countries answered surveys between March and September 2012. Participants included 8,596 patients with diabetes (1,368 with type 1, 7,228 with type 2), 2,057 family members, and 4,785 health care practitioners (2,066 primary care physicians, 1,350 diabetes specialists, 827 nurses, and 542 dietitians). Survey questions were designed to assess barriers to successful diabetes management and to establish benchmarks for health status, quality of life, access to diabetes education, and support from health care providers, family, friends, communities, and society.
The study found that 44.6% of patients with diabetes worldwide felt “significant emotional distress” related to their diabetes, 39% reported that their diabetes medication routines interfered with their ability to live a normal life, and 55.5% said they were very worried about the risk of hypoglycemia. Discrimination was a factor as well, with 19.2% of patients with diabetes saying they experienced discrimination, intolerance, and lack of support from their communities.
Among family members, 35.5% reported a “moderate” to “very large” burden from caring for a relative with diabetes, with 46% saying they would like to be more involved with helping their family member deal with feelings about diabetes, 39% expressing the desire to be more involved with caring for the person with diabetes, and 37% reporting that they do not know how best to help. In addition, 63% of family members were anxious about the possibility of their loved one developing diabetes-related complications.
“This study illustrates that diabetes remains a psychosocial burden for people with diabetes, yet also demonstrates a significant burden for their families,” said Richard I.G. Holt, PhD, FRCP, Professor in Diabetes and Endocrinology at the University of Southampton in England and study presenter. “It illustrates the need to bring together and raise the voices of people with diabetes to improve their care.”
The DAWN2 data reveal a seeming disconnect between patient and practitioner perceptions of quality-of-life issues, with 23.7% of patients reporting that their health care practitioners asked how diabetes affected their lives. However, 51.8% of health care practitioners reported that they asked their patients how diabetes affected their lives.
“This question may carry different meanings for patients versus providers,” said Tricia Tang, PhD, Associate Professor and Post-graduate Research Director in the University of British Columbia’s Division of Endocrinology, who chaired the session where Dr. Holt presented the results. “Patients may be focusing on the psychological and social burden that diabetes has exerted on their lives while providers may be focusing on the physical and functional burden. While [care providers] may think they are asking the right question, they may be honing in on aspects of diabetes that patients are not as concerned about. Clinicians may need to be trained how to ask the right type of questions to tap into the psychological aspects of diabetes.”
This study is funded by Novo Nordisk and conducted in collaboration with the International Diabetes Federation, the International Alliance of Patient Organisations, the Steno Diabetes Center, and others.
Dr. Holt is a member of the Novo Nordisk A/S Advisory Panel, and a member of the speaker’s bureaus of Bristol-Myers Squibb Company, Eli Lilly and Company, Merck Sharp & Dohme Limited, Novo Nordisk A/S, Otsuka Pharmaceutical Group, and sanofi-aventis.
Dr. Tang disclosed no conflict of interest.