Do you know how to reach more undiagnosed diabetics?
Learn to apply national campaigns to yield local results
How many stories have you seen this year about diabetes care not following standards or the newest guidelines? Chances are good it will still be a concern next year, too. But there is a bigger story that many say needs to get equal press: There are as many as 15 million diabetics in the United States now, and up to half are unaware they have the disease. In treating them, the concern is more basic than getting all the appropriate care. The question at hand is will these patients be discovered in time before they develop serious complications?
Many of the undiagnosed first discover their disease when a complication such as retinopathy or neuropathy forces them to seek medical attention. But unfortunately, by that time, the chances of preventing serious health problems have diminished or vanished.
More people are getting the message. Many note the large national programs designed to raise awareness are having a trickledown effect to the local level, where a wide range of small programs draw in the undiagnosed to see their doctors.
"We’re doing better, and I think we are identifying more people with diabetes. I’d say we may have gotten to as many as two-thirds of all of them now," says Mayer Davidson, MD, director of the clinical trials unit of Charles R. Drew University in Los Angeles. "We’re not great yet, but we are doing better than we were a couple of years ago."
Davidson, a former president of the American Diabetes Association, says there is "nothing magical" about finding the undiagnosed. "It’s simply educating the public and educating professionals."
But that second step is critical. National edu-cation programs designed by the National Asso-ciation of Diabetes Educators and the American Association of Diabetes Educators get the information into circulation, but it will take the local health care professionals to find ways to reach out in their own communities, the experts say.
One aggressive approach
"This is a huge issue and a huge problem. The only way to resolve it is to be very aggressive," says James Pichert, PhD, associate professor of education in medicine and director of the demonstration and education division at the Vanderbilt University Diabetes Research and Training Center in Nashville, TN.
Pichert follows what he calls the "cardinal rule" for reaching the undiagnosed: If people aren’t coming to the clinics, find out where the people are and go to them.
There is no one fail-safe way to reach people, he says. "It takes lots and lots and lots of little efforts."
While Pichert doesn’t take credit for these ideas, he passes them on as strategies that work:
- Train beauticians and barbers. "People talk to them in ways they rarely talk even to their own families," he says. "And beauticians and barbers spend a great deal of time chatting with their customers. If a customer complains of tiredness or seems unusually thirsty, they can pass on a list of warning signs and suggest their clients visit a doctor."
- Use lay health outreach workers. Many diabetes centers, hospitals, and health departments are hiring people who are "trusted by the communities they serve," Pichert says. They can let the professionals know what will work in their communities, and they are in a unique position to educate the people with whom they come in contact.
"It can be anything from a chance to talk about diabetes when they are driving someone to the doctor to manning a booth at the local shopping mall to talking to congregations at churches," he explains.
- Go to church. Pichert says this technique has proven to be particularly successful in African-American communities that surround Vanderbilt. It involves recruiting health care professionals who are members of each congregation. "[They] make it their personal ministry to help look out for the health of their fellow church members. It boils down to simply being a good friend."
- Network with ophthalmologists, optom-etrists, and podiatrists. These health care professionals are often the first to see a patient with undiagnosed diabetes because they are treating complications.
"A patient having trouble with his eyesight or with numbness in his feet may have developed retinopathy or peripheral neuropathy without ever being diagnosed with diabetes," says Pichert. While these health care professionals are well aware of the complications of diabetes, he advises clinicians to network with them as an important way to reach the undiagnosed. There may still be time to reverse the problems diabetes can cause.
It’s not always necessary to go to the community, as Grady Hospital in Atlanta has learned. The inner-city hospital’s biannual lobby screening draws large numbers of nearby residents who are concerned about their risk because of the prevalence of diabetes in the largely African-American community. Participants get "paper screens" of risk factors, and fingerstick blood glucose tests are given to those who ask for them or who answer "yes" to screening questions. Then they are referred to a physician.
Many of those who come to the open house have family members with diabetes, or they have even tested themselves on a family member’s monitor and gotten a high number.
"We diagnosed two people last week, and every year we get five or so new diagnoses. That means there are five people who have a chance to avoid the complications, and that’s worth it," says Kris Ernst, RN, CDE, clinical manager of Grady’s diabetes unit.
Yet Ernst says there are many people who want to get information, but they won’t take the blood glucose test. "They don’t want to be tested because they are afraid to have the official diagnosis and then have to make the major changes in their lives that diabetes requires."
That’s where the skill of the diabetes unit’s staff comes into play. They manage to persuade 98% of those who really need the fingerstick to take it, Ernst says, through the sheer power of persistence combined with understanding.
Grady’s community is saturated with information about diabetes, from the hospital’s quarterly newsletter that is sent to the general public to notices posted in satellite clinics to cards left in waiting rooms to billboards to the hospital’s symptom hotline.
Last December, a visit by Nicole Johnson, Miss America 1998, who is a diabetic and wears an insulin pump, attracted more than 300 people to Grady for a glimpse of the celebrity and to hear her message about diabetes.
"Celebrity visits are a great way to draw people in," says Ernst. The American Diabetes Association and the Juvenile Diabetes Foundation have used such celebrities as singer Gladys Knight, and actors Mary Tyler Moore, John Ratzenberger, and Gordon Jump to help spread the message.
Surprising rural response
Diabetes educators in rural Wyoming have been pleasantly surprised at the response to their half-day information sessions designed specifically to reach the undiagnosed.
"We have 65 people signed up for the next session, and that’s a very high number for our area," says Linda Chasson, MSA, program coordinator for the Wyoming Diabetes Control Program in Cheyenne. "My experience tells me there are many, many more out there and what we are seeing is just the tip of the iceberg."
Chasson says she has no doubt that people are becoming more aware of diabetes. She attributes a great deal of the new awareness to the National Diabetes Education Program (NDEP), which is jointly sponsored by the Centers for Disease Control and Prevention and the National Insti-tutes of Health.
By blanketing the airwaves with public service announcements — many of them specifically targeted toward ethnic minorities — Chasson says she thinks the general level of awareness is rising, bringing people to her local programs.
Chasson’s informal four-hour seminar gives community members a chance to "come in, express their concerns, listen to dialogue, get a fingerstick glucose test to give them a more specific idea of what’s going on with them, and hopefully get enough information to determine if they need to get a fasting blood glucose test." The free lunch provided by the American Diabetes Association adds to the attraction, she admits.
Before the information sessions, volunteers and health care workers reach the public through one-on-one conversations at health fairs, shopping malls, even in the parking lots of local supermarkets. All of these public contacts have become an important factor in the increasing awareness of diabetes, she says.
The large number of Native Americans in Wyoming means the prevalence of diabetes is also high. "We have to deal with their sense of fatalism about diabetes on a daily basis," says Chasson. "We are constantly looking for new ways to let people know that an early diagnosis can help prevent the complications virtually every one of them has seen in family members and friends. Amputations are not inevitable if they take care of themselves."
Some other suggestions Chasson offers:
- Keep it simple. Some of the best diabetes education materials are those aimed at children, she says. "I have learned a great deal from children’s books myself. We have bought books for all the libraries in the state. And we are in the process of getting books into all the elementary schools since we know that when family members know the symptoms of diabetes, they may be able to help point them out to others who may not recognize the symptoms in themselves."
Some of the books Chasson recommends are:
— The Dinosaur Tamer and Grilled Cheese at Four O’Clock in the Morning, the American Diabetes Association.
— Diabetes by Judith Peacock.
— Taking Diabetes to School by Kim Gosselin.
— Sugar Was My Best Food by Carol A. Peacock and Adair and Kyle Gregory.
— Even Little Kids Get Diabetes by Monica Driscoll Beatty.
— Taming the Diabetes Dragon by Anne Dennis.
— Everyone Likes To Eat by Hugo J. Holleroth and Debra Kaplan.
- Enlist service clubs. The Lions Club, Rotary clubs, and other service-oriented organizations can be very helpful in disseminating information about upcoming workshops.
- Network with clinical peers. Chasson says a local endocrinologist has committed to helping get the word out not only to the public, but to his fellow physicians and other health care professionals, helping generalists to sharpen their knowledge of the disease so they can more easily identify the undiagnosed. "He is committed to dispelling the myth created when a doctor tells a patient he has just a little bit of sugar,’" she adds.
Slotting diabetes education into community life has been an effective tool for Carolyn Leontos, MS, RD, CDE, a nutrition specialist at the University of Nevada Cooperative Exten-sion in Las Vegas and a member of the Ameri-can Dietetic Association’s Diabetes Care and Education Practice Group.
Leontos and her staff have saturated Nevada’s minority community with information in a bilingual, English-Spanish, campaign called "An Ounce of Prevention," or in Spanish, Mas Vale Prevenir que Lamentar.
"I am a firm believer in going to the community. Our strategy is go where the people are," says Leontos. Her team attends events like the major Hispanic festival, Cinco de Mayo, where hundreds of people obtain lists of risk factors, have an opportunity to discuss them with health care workers, and are referred to clinics if they are at risk.
"We let them know right at the outset they can do something about diabetes and let them know that small changes in lifestyle and diet will have a big effect on reducing their risks, either of developing the disease or of developing complications if they already have diabetes," she adds.
Leontos says her numbers aren’t huge; 600 people have gone through her six-part education program in the past two years. But that’s 600 people in a relatively small population base. She’s also trained a squadron of community health workers to present programs to anyone who will listen at churches, community centers, and community events.
Leontos expects to have a CD-ROM out in the spring that offers diabetic-friendly recipes for several ethnic groups and offers ways of preparing favorite foods with a healthy twist.
[Contact Mayer Davidson at (323) 563-4800, James Pichert at (615) 936-1149, Kris Ernst at (404) 616-7417, Linda Chasson at (307) 777-3579, and Carolyn Leontos at (702) 222-3130.]
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