Diabetes has emerged as one of the most common chronic diseases of childhood and adolescence. In order to guide these young people, healthcare providers need to engage them on their own terms, using their own media.
Does it seem as if you are seeing more teenagers and young adults with diabetes? You are. While the obesity epidemic and the resulting surge of type 2 diabetes in adults grab the headlines, younger patients are taking a hit from both types of the disease.
“We are seeing more young people with diabetes, especially type 2 vs. type 1, in my practice,” said community pharmacist Heather Free, PharmD, a diabetes educator in Washington, D.C. “The good news is that we have multiple treatments for both type 1 and type 2. That means that while kids can’t change having diabetes, they can take control of their diabetes. Diabetes doesn’t have to control them.”
The bad news is that diabetes has emerged as one of the most common chronic diseases of childhood and adolescence. While the prevalence of diabetes is lower in young people than in adults - 1.9% of Americans under the age of 20 vs. 9.9% of the total population - trends are troubling.
Between 2001 and 2009, the prevalence of type 1 diabetes in Americans under the age of 20 increased by 23%. The prevalence of type 2 diabetes increased by 21%. The consequences of those increases include shorter, more expensive lives.
People with diabetes seldom die from their disease. They die from complications such as cardiovascular disease and kidney disease while living lives complicated by retinopathy, neuropathy, and circulatory problems that can lead to amputations.
The complications of diabetes are related to the duration of the disease, said certified diabetes educator Sally Gerard, DNP, MS, associate professor of nursing at Fairfield University, Fairfield, Conn.
“The younger you are diagnosed, the longer diabetes affects your life and adds to the cost of healthcare,” she said.
An adult who develops type 2 diabetes at age 45 might develop cardiovascular complications 10 or 15 years later, around 55 or 60 years of age. A teenager who develops type 2 diabetes at age 15 might present with similar cardiovascular complications at the age of 25 or 30. Early development of chronic diseases traditionally seen in older adults increases the financial impact of diabetes, which was pegged at $245 billion annually by the Centers for Disease Control and Prevention in 2012.
Not surprisingly, diabetes shortens life expectancy significantly for individuals who develop the disease at a younger age, noted David J. Pettitt, MD, senior scientist at the William Sansum Diabetes Center in Santa Barbara, Calif. Pettitt was lead author for the 2009 results for the SEARCH for Diabetes in Youth Study, a long-term population study of diabetes in young people. He added that the greatest net value of future earnings lost due to premature death from diabetes is in children and young adults.
Differences in life expectancy
While differences in life expectancy between individuals with diabetes and those without diabetes are shrinking thanks to improved treatment, diabetes still shortens life expectancy. The diabetes difference is more distinct in younger patients than in older ones.
Data presented at the 2013 meeting of the European Association for the Study of Diabetes showed that the expected life span of individuals with type 1 diabetes who are approximately 20 years old is likely to be up to 14 years shorter than for similar individuals without diabetes. For adults with type 1 at age 65, the survival gap shrinks to seven years.
“We are seeing a changing face of diabetes,” said Desmond Schatz, professor of pediatrics and medical director of the Diabetes Center at the University of Florida, Gainesville, Fla. “Whereas nearly all patients under the age of 20 used to be type 1, we are seeing more type 2 patients aged 2 to 10 years, although not with the numbers expected to accompany the obesity epidemic. And while type 1 and type 2 are linked to similar long-term complications, they are unique problems that require unique approaches.”
Diabetes used to be a tidy disease. Children diagnosed with diabetes were assumed to have juvenile onset diabetes, now called type 1 diabetes. Adults diagnosed with diabetes were assumed to have adult-onset diabetes, now called type 2 diabetes. Changing demographics, changing lifestyles, and changing eating patterns have disrupted that orderly picture.
The incidence of type 1 diabetes in young people is increasing 2.5% to 3% every year, Schatz said. That means a doubling every 20 years. Although the incidence of type 1 diabetes increasing in young people is not clear, he said, in prevalence there are clear racial and ethnic differences.
In 2009 the prevalence of type 1 diabetes in young people was highest in non-Hispanic whites (2.55 per 1,000 population) and lower in African Americans (1.63/1,000), Hispanics (1.29/1,000), Asian/Pacific Islanders (0.60/1,000) and American Indians (0.35/1,000). Overall type 1 diabetes diagnosed in young people in 2009 was 1.93/1,000.
The picture is even more alarming in type 2 diabetes. When Schatz began practice, type 2 disease accounted for less than 1% of the juvenile diabetes population. Today, type 2 accounts for 20% to 25% of all pediatric and young adult cases of diabetes, up to half of the diabetes cases among young Hispanics, and nearly 90% of the diabetes cases in young American Indians.
During the 1980s, type 2 was virtually unknown in young people. In 2001, the initial SEARCH survey reported the presence of type 2 diabetes in all racial and ethnic groups. In 2009, the prevalence of type 2 ranged from 0.9% in non-Hispanic whites to 6.3% in American Indians.
The prevalence of type 2 is highest in minority populations: American Indians (0.63/1,000), African Americans (0.56/1,000), Hispanics (0.40/1,000) and Asian/Pacific Islanders (0.19/1,000). That compares with 0.09 per 1,000 for non-Hispanic whites. The overall prevalence is 0.24/1,000.
Why has diabetes increased dramatically in young people? In the development of type 2 diabetes the role of obesity is clear, but there are no solid explanations for the development of type 1 diabetes. Genetics plays a role in the development of all types of diabetes.
The American Diabetes Association reports that children whose father has been diagnosed with type 1 diabetes have a one in 17 chance of developing type 1 disease. If a child’s mother has type 1 diabetes, the risk of the development of type 1 in the child depends on the woman’s age when giving birth.
Children born to a mother with type 1 diabetes who is younger than 25 have one chance in 25 of developing type 1 disease. If the child was born after the mother turned 25, the child’s risk is only one in 100. If both biological parents have type 1 diabetes, the child’s risk is between one in 10 and one in four.
The increasing incidence of type 2 diabetes in young people appears to be associated with increases in obesity just as it is in adults. The risk of the development of type 2 diabetes is higher if the individual has a family history of type 2 diabetes.
“Genetics sets the stage and environment pulls the trigger,” Gerard said. “Americans have the highest rates of diabetes in the world. A high-carbohydrate diet with susceptible genetics and you have a major problem.”
One reason for the strong familial association may be that families tend to share eating, exercise, and other lifestyle habits associated with the development of type 2 diabetes. As more adults become obese, they teach their own poor lifestyle habits to their children, who become obese and pass those same unhealthy lifestyle habits on to their children.
“When you are dealing with children and adolescents, you’re not just dealing with the kids,” Free said. “You are dealing with caregivers, too - the parents, grandparents, sitters. When it comes to medications and changing behaviors, you are dealing with the entire household, not just one patient.”
Different strategies and techniques are needed to help teens and young adults who have diabetes and may not have a sense of their own mortality, as mature adults do.
“Young people with diabetes are young people first,” said Evan Sisson, PharmD, MHA, associate professor of Pharmacotherapy and Outcomes Science at Virginia Commonwealth University School of Pharmacy in Richmond, Va. He is also a certified diabetes educator and pharmacist at a local free clinic.
“They think they are going to live forever, just like any other young person. That’s the real challenge. Older adults tend to have a more responsible outlook, but teens, even people in their 20s, haven’t had time to figure it out. At the same time, they want to make their own decisions; they want to be in control of their lives. That’s one way to get through to them.”
Sisson said motivational interviewing can be a useful technique for young people. Information about diabetes is a starting point, but treatment algorithms and logical explanations of why lifestyle changes and medication adherence are critical to good glucose control aren’t enough.
Some older people are compliant simply because the professional in the white coat told them what to do. Young people don’t take well to that kind of instruction.
“It’s easy to preach,” Schatz said. “It is slower to empower. But when you are working with young people, empowerment is the most important way you are going to make a difference in their lives.”
It is tough to convince young people to do anything, Sisson said. Patients with type 1 and type 2 diabetes need to make different kinds of changes, but both have to adjust their lives and their lifestyles in order to control diabetes. Motivational interviewing can help them recognize the need for change and ways to make changes.
“What we can do with motivational interviewing is help them see that there are consequences to what they do, good consequences and bad consequences,” he said. “It’s a matter of helping them see the differences and letting them do the problem solving on their own.”
Technology is another opportunity. Young adults grew up on technology. The internet, e-mail, texting, mobile video, apps, and social media are as much a part of life as telephones were to an earlier generation.
Insulin pumps are a source of fascination. Older patients are afraid to touch their pumps for fear of breaking something, Sisson said. Younger patients can’t wait to get their hands on a pump.
“It’s a very different approach to technology,” he said. “Young people want to start playing with their pump. They want to see what it can do; then they want to see what they can make it do, just like their phones. They figure things out by playing with them.”
Keeping a meal diary is a chore - but there’s an app for that. It might be on a phone or, more conveniently, on a glucose meter. The current generation of glucose meters does far more than simply produce glucose readings. They can be used to log carbohydrate consumption, store readings, upload readings to secure websites, and far more.
Glucose meters are critical tools, saidFree, not because of the raw numbers but because of the changes in readings and what those changes can tell her patients.
“Young people thrive on technology,” she said. “Glucose meters are technology that helps them see what does and doesn’t work in what they are eating and how well their meds are and aren’t working. Once you have enough meter readings, you have a blueprint of your life and your physiology that you have created. Not I, the diabetes educator and pharmacist, but you, the person with diabetes. You collected the data; you controlled the technology. That brings the ah-ha moment that puts you in control of your diabetes.”
Mobile technology is another key. Smart phones are nearly ubiquitous in the 15- to 25-year-old set, which means that information is always available. The pharmacist has to be available, too.
“These patients expect real-time access to somebody who knows them, their diabetes, and their treatment,” Sisson said. “That means real-time access to a pharmacist. You have to be open to texting and social media, and you have to be up on technology. In one important way, young people are no different from anyone else. They expect you to meet them on their preferred channel of communication, in their language, on their time. They live in real time and you have to deal with them in real time.”