After having been under the care of a familiar paediatric team for years, leaving is often very difficult for the patients. So much is different in adult medicine...
The transition to adult diabetology can, however, be successful. How? Professor Walter Burger, from Berlin, explains. 

Felix is now 21. He has had type 1 diabetes since he was seven. Until he was 19, he was under the care of a team of diabetologists responsible for children and adolescents. He had experienced so many ups and downs with them. (The frequent measuring and injecting had never been his strong point – a fact that was reflected in his HbA1c levels that, at times, reached as much as 11%. Twice he just escaped two very serious episodes of ketoacidosis, thanks to the 24-hour emergency services!). As of 18, he settled down, his metabolic situation stabilized, and his HbA1c value reached a steady 7% to 8%. 

Around six months after commencing his studies as an electrician, Felix changed to a diabetologist who, with his consent, had been given a thorough briefing on his medical history. The initial contact went smoothly, they got on well.

After two years, Felix’s mother rang the original paediatric team, requesting an assessment for Felix’s application for a driver’s licence. When asked why she hadn’t done this at his present diabetologist, the reply came: “Well, he hasn’t been there for ages. There was some problem with the appointments. He doesn’t do hardly any monitoring or recording anymore.”

Subsequently, he obtained an appointment with his ‘old’ diabetologist and explained that, despite a positive start, he had found it increasingly difficult to arrange appointments, especially now that he was studying. After having missed an appointment, he had been snapped at rather harshly by one of the assistants, who failed to give him another appointment at short notice.

At this, he had no choice but to collect his insulin at the local general practitioner. He reported that he hardly measured his blood sugar anymore, and didn’t keep records. Other than that, he felt fine, and his studies were going very well, and he would be finishing soon. He smoked around a packet a day, and his current HbA1c value was 9.8%. 

This scenario is based on an actual patient and similar stories occur, unfortunately, not infrequently. 

Transition means parting from the paediatric diabetologist
The transition from paediatrics into adult medicine is considered a major change, and occurs usually between the ages of 18 and 21. Many chronically ill adolescents, however, do not manage to make this transition. They lose contact with the close medical supervision, and often do not present at a clinic again until something goes wrong or complications arise. All the previous long-term efforts to hinder the onset of complications can, in this way, rapidly end up as dust in the wind. 

What stops a smooth transition? 
As opposed to certain other chronic conditions, there is a nationwide availability of qualified care for those with diabetes in Germany. The problem, therefore, lies not with a lack of quality in the treatment of adults with diabetes but rather in the change of style and atmosphere, as has been reported by many young people with diabetes and their parents. Less time is often given to the patients than what they were previously accustomed to. Personal and familiar topics are not covered as often. It is expected that the patients are able to explain what is important for them – to be more confident and independent, and to be able to impart exact information on the course of their illness, their treatment and their medication.

In addition, patients are expected to be able to speak about problems on their own initiative, to make clear when they need help, and to keep appointments. In adult medicine, patients are not usually chased after on the telephone if appointments are missed. It often takes a long time until another appointment can be made. The staff do not often take to those who miss appointments too kindly. This, alone, is often enough to put off the new patient from continuing the visits – like in Felix’s case.

The inevitable transition to another doctor brings with it situations where individual factors in the patient’s medical history and the individual personality can be overlooked, or have to make way for other challenges facing the unexpectant patient. For example, some young people who, for years, together with their diabetes teams, had to work hard at maintaining an HbA1c value at 8%, find it hard to suddenly have to hear that a value over 7% is “simply unacceptable”.

Finally, young people with type 1 diabetes, who previously had little to do with type 2 diabetes patients, can find it rather intimidating to have to sit with elderly patients with completely different problems and, at times, very visible complications.
 
How to succeed
The transition to adult medicine should be prepared for over a long period of time, i.e., already at around 16 years of age. As the actual time of transition approaches, possible obstacles should be exposed and dealt with openly. To this end, the paediatric team should offer help and the necessary schooling. This can include issues such as social entitlements, and help in finding the centres for continuing care. It also means encouraging the youngsters to become more independent in terms of their condition – no longer being able to lean on their parents and diabetes teams for treatment management. 

Parents also have to be prepared to gradually transfer responsibility of treatment to their children, and should receive help in doing so. It is often very difficult for parents, having cared for their diabetic child through thick and thin from a very young age, to relinquish that responsibility.

It must be ensured that the succeeding physicians and their teams are fully informed as to the medical history of the new patient. This can, in most cases, take place over the phone. In more complicated cases, however, it may require a meeting, or even a case conference in which all those involved (incl. psychologists, social workers) participate. 

Even with good preparation, however, a smooth transition can turn bumpy – as in Felix’s case. It is, therefore, necessary to have somebody to oversee the transition for a certain length of time to check whether the patient has indeed managed to adapt to the new situation. International programmes exist to this end, also here in Berlin, in which a so-called ‘case manager’ takes on this task. 
The Berliner Transition Programme was created initially to help young people with type 1 diabetes and young people with epilepsy to cope with this transition. It is in the planning to extend this service to other chronic illnesses, thereby preventing complications through lapses in quality treatment.

The transition from paediatrics to adult medicine is not only difficult for young diabetics, but for all young people with chronic conditions. This patient group is playing an increasingly important role in paediatrics: According to current statistics, 39% of children and adolescents in Germany have a chronic condition. One in six people between the ages of 14 and 17 requires special treatment. It is estimated that around 40% of young patients transferring to adult medicine discontinue their special treatment. 

Special transition programmes in England, the USA and Australia have been able to reduce the incidence by 10%. 

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Prof. Dr. med. Walter Burger
Head of the Diabetes Centre for Children and Adolescents
DRK Clinic, Berlin
Germany  
Westendw.burger(at)drk-kliniken-berlin(dot)de