For people with type 1 diabetes (T1D), it’s important to be a 24/7 disease manager, which can be a complicated task. At JDRF, we investigate how to make T1D management easier, which involves listening to what’s happening across the global T1D community. So when we heard from people with T1D “across the pond” in the United Kingdom about the benefits of a special program, we decided to dig a little deeper.
Four years ago, James Ford had never even heard of multiple daily injection (MDI) insulin treatment when his registered dietitian recommended he take a new skills-based T1D education program offered at Monklands Hospital in Airdrie, Scotland. The then 25-year-old had taken fixed mealtime doses of 70/30 insulin, a common mixture of fast-acting and slow-acting insulin, since his T1D diagnosis at age 15, a routine that no longer meshed well with his active lifestyle. And with his hemoglobin A1c at a high of 11.7 percent, his personal and professional well-being were starting to suffer. “Not being able to properly manage my blood sugars left me tired, skinny, and continuously ill. This affected my punctuality at work and my competency,” recalls Mr. Ford, a civil engineer. His dietitian recognized that he needed diabetes treatment tools that would work for his lifestyle rather than against it. So James met DAFNE.
DAFNE stands for Dose Adjustment For Normal Eating. Available throughout the UK, this five-day, intensive education program teaches adults 18 years and older with T1D to accurately calculate their insulin doses for meals, exercise, and changing lifestyle needs. It also helps participants learn about crucial diabetes-management skills. And the small class size for this program allows for individual attention while also fostering a support-group atmosphere.
Ongoing clinical research has demonstrated the positive clinical and psychological outcomes of taking a DAFNE course. An August 2012 study published in Diabetes Care found a mean decrease in A1c of .27 for DAFNE participants at one-year follow-up. But other clinical benefits are more dramatic; a year after finishing the program, 43 percent of participants who had hypoglycemic unawareness before DAFNE are once again able to recognize symptoms of blood-sugar lows. And among those who had reported severe hypoglycemic episodes before taking the course, 62 percent had not experienced another severe low-blood-sugar episode in the year following their DAFNE participation. Levels of anxiety and depression also fell significantly for those reporting these symptoms prior to starting the course.
But the real success of the program may be in the knowledge and empowerment people with T1D gain from DAFNE. “When I finally got on DAFNE and started learning how to control my blood sugars, it literally changed my life completely,” Mr. Ford recalls. He gained an understanding of the relationship between carbohydrates and insulin that had previously eluded him. He also discovered how important it is to develop a routine around testing blood glucose, eating, and testing again. “I almost instantly felt better, had more energy, and got my appetite back,” he says. “It was unbelievable how easy it was and that I had been missing out all this time.” An A1c drop to 8.2 percent soon followed.
“Quality-of-life improvements are powerful, and interestingly, they are sustained for many years even if A1c levels regress. This includes treatment satisfaction and improved belief in people’s own ability to control their diabetes,” explains Professor Simon Heller, M.D., a member of JDRF’s Scientific Advisory Committee in the UK and chair of the research arm of the DAFNE program.
“It systematically provides the skills and competencies of insulin management to people with type 1 diabetes, allowing them to lead a much more flexible lifestyle while maintaining tight glucose control if they choose to do so,“ Professor Heller adds. “It also leads to major reductions in the risk of hypoglycemia, perhaps because it teaches people to use insulin more safely.”
DAFNE participants attend a Monday-through-Friday, full-day structured program led by diabetes nurses and dietitians. Class size is capped at six to eight participants, which Professor Heller notes is another key part of DAFNE’s success, and a real differentiator from other diabetes education programs in the UK. “By being a group program, it allows individuals to share experiences and get peer support from other people with type 1 diabetes—a powerful and positive experience.”
During the 38 hours of instruction, participants spend a good deal of time in group discussions, exploring how different foods and situations affect their blood-glucose levels. Individuality of goals and how each person is different are stressed. Students learn how to identify and quantify those foods that make blood sugar rise and how to use insulin more effectively to reach individual blood-sugar targets.
DAFNE instructors also take the participants through nutrition basics, such as learning how to accurately estimate carbohydrates and read food-package labels. They provide tips for eating out and weight control. Carbohydrate control and the impact of other nutrients on blood-sugar control are discussed. But the emphasis is on understanding how an individual’s food choices, whatever they are, impact blood-sugar levels, and how to adjust insulin to manage those rises.
The DAFNE program was modeled after a similar T1D curriculum designed by the late Michael Berger, M.D., and his wife, Ingrid Mülhauser, M.D., in Düsseldorf, Germany. In the late 1990s, Professor Heller visited Düsseldorf with several colleagues to see the program in action. He then wrote the grant proposal to fund the original DAFNE trial, which launched in 1998 and involved three clinic sites in England. After successful results were published in the British Medical Journal in 2002, DAFNE sites began training and launching across the UK.
DAFNE’s structured written curriculum allows the program to be reproduced and administered systematically and consistently. And a separate professional curriculum for healthcare providers ensures that those teaching the course are well trained. The DAFNE Educator Program provides more than 100 hours of training for diabetes-specialist nurses and dietitians. Physicians receive 45 hours of instruction in the DAFNE Doctor Program.
Since its launch, DAFNE has expanded from the three original trial centers to 77 diabetes centers across the UK and the Republic of Ireland. The program has also gone international, training T1D teams to launch DAFNE courses in Australia, New Zealand, Singapore, and Kuwait.
So how does DAFNE stack up against U.S. programs? While the American healthcare system has no universally available, free, standardized intensive education program for T1D, there are some innovative programs out there that are achieving similar results.
The Joslin Diabetes Center, located in Boston, MA, offers a T1D-specific version of its popular four-day “DO IT” (Diabetes Outpatient Intensive Treatment) program. It is very similar to DAFNE in its focus on individual care, small-group interaction, structured extended education, and merging of real-life challenges with practical care solutions. The program offers individual sessions with a physician, nurse educator, nutritionist, exercise physiologist, and mental health professional, along with a series of group classes on insulin action and dosing, nutrition, and more. Class participants eat and exercise together, and use it as a learning experience to see how to appropriately dose insulin and manage blood-sugar levels.
Howard Wolpert, M.D., a senior physician at Joslin who works in the “DO IT” program, says that the program “is valuable in terms of setting a foundation. It’s sort of a ‘time-out’ for many people, because in my experience, when people come into the clinic and they have a lot of other competing life demands, the challenges of life take over the moment they leave.” The intensive, structured program helps eliminate those distractions so a person can focus on his or her T1D treatment. “Some patients describe it as ’boot camp,’” adds Dr. Wolpert.
Down the coast in Miami, FL, the Kosow Treatment Center at the Diabetes Research Institute (DRI) offers a five-day, intensive insulin-management program designed for adults on MDI or pump therapy to master insulin dosing, carbohydrate counting, glycemic-pattern management, and other important skills. The Mastering Your Diabetes (MYD) program is limited to 12 participants and also includes an individual medical assessment and a follow-up “booster” class at a later date. In addition to teaching clinical skills, there is a focus on emotional well-being, group dynamics, and team building. Psychologists and other healthcare professionals encourage participants to practice good diabetes management without disrupting their daily lives.
Much like DAFNE graduates, MYD participants report improved quality of life following the program. Luigi Meneghini, M.D., director of the DRI’s Kosow Diabetes Treatment Center, explains, “MYD participants graduate with a much deeper understanding of insulin management and the variables that affect diabetes control. Participants leave with a sense of control over the disease and a relief from the frustration, anxiety, and uncertainty that diabetes often brings.”
While the quality-of-life improvements that DAFNE graduates experience seem to be long lasting, there is work to be done in helping participants maintain their A1c reductions for the long term, according to Professor Heller. “We urgently need to explore ways of supporting individuals to maintain these skills and continue to self-manage their diabetes effectively,” he says.
DAFNE Online may be one way to help extend the reach and success of the course. This online community of DAFNE graduates, healthcare professionals, and friends and family of those with T1D is available at dafneonline.co.uk. The site features online blood-glucose diaries, a carb counter, and a discussion forum for continuing the community conversations that are an integral part of the DAFNE experience. There are also iPhone and Android mobile apps available to track blood-sugar levels on the go.
“I try to visit the site on a daily basis so as to read the forum and discuss our conditions, help each other,” says DAFNE graduate James Ford. “The diary is very useful for record keeping, giving you a guess at your A1c and helping with making adjustments. It’s also used a lot in the forums when people need some fresh eyes to look for solutions.”
With a new baby at home, Mr. Ford is transitioning through different lifestyle changes these days. But the skills he has gained through DAFNE have prepared him to adjust his T1D management through this life phase and others to come. As he succinctly puts it, “DAFNE is only the foundation to build your treatment on, but it’s a mighty strong one, that’s for sure.”