Helping Young Adult Patients with Chronic Illness Shift to Adult Care

What is a chronic illness? It is a condition without a cure. You can treat it in order to control its severity but someone with a chronic condition will need to keep taking medications for the rest of their lives. When we think of chronic medical conditions we think of hypertension and diabetes. They’re diseases present in every family almost everyone has a hypertensive uncle or a diabetic grandmother. That’s what comes to our mind. We think of chronic diseases as things that affect older people. You don’t worry about getting diabetes in your twenties or thirties but maybe you start worrying in your fifties.

We don’t, however. think about chronic diseases that affect people for the vast majority of their lives. A chronic disease isn’t an old people disease. Children suffer from chronic diseases every day. Some of these diseases include systemic lupus, type 1 diabetes, juvenile idiopathic arthritis, and juvenile dermatomyositis. Most of these are either autoimmune or rheumatologic diseases. They can affect kids at a really young age and continue to do so for their entire lives because there’s no treatment.

A disease like type 1 diabetes for instance will require a child to take several insulin shots during the day or having to live with an artificial insulin pump. Something like juvenile idiopathic arthritis can cause a child joint inflammation and pain. You can imagine the consequences of such a thing. These children need all the care they can get in order to control these diseases. Their manifestations can be very difficult to live with when controlled by treatment let alone without it.

Children receive that care from their parents and pediatricians. Parents will make sure their kids follow up with their doctor and take their treatments while doctors will do their best to ensure a child is on the best plan that will help him or her lead a normal life. There will come a time when a child grows up and can no longer be under the supervision and care of a pediatrician. The transition between a pediatrician and an adult doctor can be a bit tricky for a variety of reasons.

One program in Wisconsin is working on this in order to help teens and adolescents go through this phase. The program is called “Got transition” and it focuses on teens that have chronic rheumatologic diseases. So far 120 teens ages 16 and up have participated in the program. The program includes several tools to help children achieve this transition. These tools include a questionnaire in order to determine how well a teen understands his or her illness, education and additional information on their illness in order to make everything perfectly clear to them including their treatment, and a free app that includes all the medical information the adolescent will need.

At the Children’s Hospital of Wisconsin they try to keep the children under their care and supervision for as long as possible. This may include as far as college or until the patients get actual jobs. This isn’t sustainable for long because twenty year olds should not be going to pediatricians and the transition to an adult physician has to happen at some point. In Wisconsin, they believe that the best age for this transition is at sixteen years old. This is an age where patients are old enough to start understanding how to take care of themselves. Before this, it was all dependent on the parents telling them when to take their medications and when to go see a doctor. At 16 the patients need to start learning how to do these things for themselves.

Besides the questionnaire, medical education and info, and the free app there are a few other features of the Got Transition program. These include a letter written by the patient’s current pediatrician that will contain all of the patient’s medical info including diagnosis and treatment, a checklist is started on the child’s health record with certain educational topics that should make the transition much smoother, a summary of the child’s condition and additional links relevant to the condition, and finally counseling in order to get through the transition to an adult physician is added to the medical problem list.  

The app mentioned is called Healthspek. This app will contain a person’s history, diagnosis, list of current medications, and the location of a pharmacy. The app also has a notification feature that will pop up asking the patient if he/she took their medication yet. This is wonderful because at the start of the transition they really can forget to take their drugs. You can’t go from having your parents reminding you every day to take your medication to not having anyone at all. It’s extremely important to remain compliant because missing a dose or drug can result in terrible consequences. A flare up of systemic lupus for instance can result in kidney and brain issues that could’ve been easily avoided.

At Wisconsin the program is yielding great results and the feedback has been very positive so far from patients and their parents too. They believe that this program makes the transition smoother and helps the child become independent. The adolescents who went through the program also reported feeling much more comfortable and confident when they went to see their adult practitioner for the first time.

It’s absolutely necessary for a young adult to go visit their adult doctor prepared and knowledgeable when it comes to their condition. A pediatrician will spend half an hour with a child and his/her parents while an adult provider won’t be spending more than 15 minutes with them. Even if during one of the visits the pediatrician didn’t spend enough time with the family the parents will still know how to act and when to seek additional medical help.

It can be very intimidating going to a doctor alone for the first time at the age of 18. Some people are afraid of going to the doctor at the age of 50. So a teenager might not ask a doctor the questions he or she has in mind. The doctor could also be under the impression that the patient already knows everything he should know about his condition. This could result in some consequences such as not fully understanding when to take a certain drug or how much of it to take. It could also mean not knowing the warning signs of their disease.

A child with type 1 diabetes for instance needs to know the warning signs of the multiple complications of diabetes. For instance taking extra insulin or not eating enough calories could result in a disastrous complication such as a hypoglycemic coma. This happens when the brain isn’t receiving enough glucose which is basically its fuel. This can happen with too much insulin or not enough food intake (calories). Some of the warning signs would be feeling palpitations, tired, and agitated. A patient who recognizes these signs knows that eating something sugary or even mixing some sugar in a glass of water and drinking it would relieve the symptoms and make him/her feel better until they can get something to eat (as soon as possible). On the other hand if these signs are missed and a hypoglycemic coma does happen it could be fatal.

There’s nothing more important than the health of our children. Young adults are the future and the foundation of every country. They need to be in the best possible state they can be. For all of these reasons more programs like Got Transition need to be implemented all over the world in order to make the transition from pediatric to adult care smoother so that these young adults can learn to be independent and know how to take care of their own health.