When it becomes time for a teen or young adult to leave his childhood diabetes care providers and move on to adult care providers, it is common for both the young person and his parents to feel some anxiety about making the transition. Families are reluctant to leave a place where they know the people, have been well cared for, are comfortable, and know what to expect. While some providers encourage their patients to seek adult care at age 18, most are willing to be flexible, based on an individual patient’s needs and situation. However, at some point, young adults are usually better served by going to an adult care provider, and the switch must be made.
A vulnerable time of life
Ideally, a young adult will have achieved a high level of self-sufficiency in his diabetes care by the time he transitions to an adult care provider. Unfortunately, this is not always the case. It is now fairly well recognized that on the whole, young adults with diabetes are a very vulnerable group. The reasons for this are many and include developmental, cultural, societal, and economic factors.
Young people who leave their parents’ home to go to college often have trouble with their diabetes care because other priorities, such as schoolwork, a job, and socializing, take precedence. Diabetes care at college may be complicated by a lack of spending money, institutional meals or reliance on fast food, busy schedules, late-night studying (or other activities), lack of sleep, and alcohol use. Students often try to fit in doctor and other diabetes care appointments over holidays and breaks, but the result is often fewer, or more widely spaced, appointments than the ideal, which is to see a health-care provider every three months. Even students with the knowledge, expertise, and tools to make changes to their diabetes regimen on their own often neglect to upload their pumps and meters and analyze the data that would enable them to make those changes.
Young people who stay at home and either attend a local school or go to work often continue to have some parental oversight of their diabetes care, although parents may be trying to let go and foster independence. However, the pressures and problems that are typical of this age tend to cause diabetes care to be a low priority. Some youths continue to consider diabetes management as belonging to their parents, because their parents are around and vigilant, and they do not “own” their diabetes or feel responsible for it.
Young adults who move out of their parents’ home to work — or to seek work — may be most at risk because they often have a low income, few benefits (such as health insurance), little or no support in their diabetes care, and unreliable access to transportation.
Unfortunately, many people in their late teens and twenties do not seek diabetes care at all or seek it inconsistently. They may not have good health insurance coverage (and millions have no health insurance), or they may be enjoying their apparent freedom from the tasks of diabetes when not under parental supervision. This group often neglects self-care until problems begin to emerge. Sometimes by then it is too late to reverse the effects of multiple years of poor diabetes control, and complications emerge just as these people are starting a family or a career. This is a sad and preventable situation.
A physical–psychological mismatch
Developmental theory has taught that there are traditionally three periods of adolescence, each with its own characteristics: Early adolescence generally is ages 10–13, middle is 14–17 years, and late has been described as 18–20 years or older. Theory also proposes that at the end of the adolescent period, the person will have established a self-identity and emotional separation from the family. The other end-point of this developmental period is child-bearing.
If you look at the history of human evolution, back to the earliest days of hunter-gatherer groups and agricultural settlements, physical and psychosocial maturity occurred at approximately the same time. In fact, physical maturity probably slightly followed psychological maturity. Even at the time of the industrial revolution, some 200 years ago, this was the case.
However, since then, biological maturity has come far in advance of psychological maturity, and interestingly, where they used to coincide, now these two areas have no overlap. Physical maturity comes at or around 12–13 years for girls and 12–15 years for boys, while psychological maturity may not be achieved for another 25 or so more years. Some developmental theorists today even suggest that in our current culture, the late adolescent period can extend until age 40! Youth in our society are getting married later than previous generations (or not marrying at all), frequently moving back under their parents’ roof during some portion of their adulthood, and often taking a long time to become established in a job or career and to start a family.
In view of this mismatch, and recognizing that young adults with diabetes are often underserved for many reasons, the American Diabetes Association, American Association of Diabetes Educators, and JDRF (formerly known as the Juvenile Diabetes Research Foundation) have all recently called for research into and development of better and more accessible programs that assist young adults in obtaining the diabetes care they need.
The current system
The time of transitioning from pediatric to adult care usually coincides with other life events such as graduating from high school, beginning college, starting a job, and/or moving out of the family home. However, the age at which a teen or young adult leaves pediatric care is not universally set and often depends on where the person receives care, the number and type of providers in the practice, and the expertise of those providers in both pediatric and adult diabetes. Most primary-care pediatricians will discharge their patients to adult care at age 18 or graduation from high school, whichever comes later.
At the Children’s Hospital of Pittsburgh-UPMC, where I work, we can continue to see patients up until their 24th birthday, if necessary, although that is not the norm. Many larger medical settings and children’s hospitals are similar. If a teen is developmentally delayed or continues to be followed in another pediatric specialty clinic such as cystic fibrosis or cardiology, we will continue to follow them so as to keep all of their care in one place. Otherwise, we strive to individualize care and assist young adults in finding a place to go where they will feel comfortable.
Personally, I think it makes sense for pediatric providers to follow college students at least through the first term or even first year if the student can get to his appointments. Everything in the student’s life is changing, and having a health-care provider who knows him is one area of stability. If distance or a student’s schedule prevents him from getting to diabetes care appointments, however, he needs to switch to a health-care provider who is nearer geographically or whose office hours can accommodate him.
Easing the transition
To help make your child’s transition to adult care as smooth as possible, begin talking about it early — as early as middle school, but at the latest while your teen is still in school. Talk to your diabetes providers about any transition programs that might be available (at a nearby children’s hospital, for example) and about where they refer patients. Talk to other parents of youth who have moved to adult care to see who is liked in the community.
If your college student is going to be away at school, find out who the diabetes providers are in the area, and try to find one who is experienced in treating diabetes in college students. Ask your current diabetes care provider if he can recommend anyone, talk to an administrator in the school’s student health center, or check the Clinician Directory and Search page of the National Committee for Quality Assurance website, http://recognition.ncqa.org, for recognized diabetes care providers in the area. It is especially important to have an established local health-care provider in case of emergency. Once your student is at school, prompt him to be seen at three-month intervals.
In addition to looking for a physician for your college student, find out whether there are any young adult support groups or programs for students with diabetes at the school. The website of the school your child will be attending may list student groups and activities, and it should have contact information for staff in charge of various aspects of student life, including clubs and organizations.
Help your child explore transportation options in the area he’ll be living to determine how easily he’ll be able to get to medical appointments.
Talk about problem solving, and strategize what to do when situations come up. Part of maturity is anticipating and preventing problems. You can role-play these situations, which is a great rehearsal for the real thing. If you and/or your child are not sure what to do in the following situations, thinking about it now gives you the chance to talk to his pediatric providers or otherwise research possible solutions.
• What will you do when you’re sick or you wake up with large ketones because your pump pulled off in the night?
• What will you do when you run out of insulin at 11 PM?
• What will you do when encouraged by your friends to smoke, chew, drink alcohol, take drugs, or have sex?
• What will you do if you feel really low in the middle of the night and your roommate is sleeping or not in the room? How will you deal with low blood glucose at night?
• What will you do if you find out an exam is scheduled for the day of your next diabetes appointment?
• What will you do if you develop a blister or cut on your foot that won’t heal, is painful, or looks infected?
• What will you do if you notice your vision is blurry?
Talk about targets, goals, and priorities, and encourage your young adult to talk to his diabetes provider about these so that they are achievable, understood, and accepted.
Of all the tasks and goals involved with diabetes management, the most important is that the person with diabetes takes all of his insulin all of the time. When blood glucose control deteriorates rapidly, it is most often because insulin has been omitted. Talk to your child with diabetes about this fact, stay informed about his insulin dosing, and remind him of the importance of taking all of his prescribed insulin as necessary.
Parents should begin to allow their teen or young adult to be seen alone during medical appointments at least six to nine months prior to transitioning to adult care. It is hard not to be as involved, but encouraging your child to take ownership of his diabetes is key. Even though you may still be legally responsible for your teen, give him a chance to do it on his own. Most health-care providers will encourage this and can give you a summary at the end of visits.
When looking for a provider of adult diabetes care, look for one who sees a lot of young adults and appears to have a good working relationship with them. Some multidisciplinary programs (those that have staff from many professional disciplines, such as nutrition, psychology, and weight loss, in addition to medicine and nursing) are evolving at larger centers that are focusing on introducing the adult provider while the teen or young adult is still being seen in the pediatric setting.
Look for a provider who has access to diabetes educators, dietitians, and social services and who has a research focus. Ask if the practice is involved in any research studies; often, when a person participates in a research study, some services are covered financially. Large programs are most often found at university settings, and if your young adult is lucky enough to be near one, take advantage of it.
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In spite of there being national recognition that young adults with diabetes need more support, this is not an easy problem to solve. This age group is not always “into” their diabetes and often does not appreciate their current good health. Many believe they will be able to deal with diabetes problems if and when such problems occur.
Transition programs are now being created, and there is a call for research in this age group to see what works best. Some programs are striving to introduce young adults to adult programs that can serve as a base for care as long as they stay in the area. Tragically, many young adults stop seeking care due to finances, insurance coverage issues, transportation, other priorities, and a lack of commitment to caring for their diabetes.
It is also true that most adult care providers take far less time for patient appointments than pediatric providers, so providers may not fully understand a patient’s barriers to seeking care, and young adults may miss the nurturing environment, services, and attention to detail often seen in the pediatric setting. Getting comprehensive diabetes care is further complicated if a young person must make separate appointments — possibly in different locations — to see other members of the diabetes team such as dietitians and educators.
This is why it is critical that parents advocate for their young adults, explore possibilities for future care early, and devise a plan of care with their young adults’ input. Although many medical settings are now exploring ways of addressing these needs, it will be up to your young adult to follow through. Advocate for better programs, and insist that your student or young adult make and keep necessary appointments for his diabetes care.