Transition to adult care is radical for chronically ill young people

Having a chronic condition is never fun and often requires repeated visits to the hospital and following treatment recommendations. For young people with a chronic condition, this is even more drastic. Peeters: "The transition to adulthood is a turbulent phase for every young person. They are no longer school pupils, but students or workers, and start leading a more independent life. This means that structure and regularity are often lacking, which leads to instability and vulnerability. Furthermore, going out becomes important and alcohol is introduced. In addition, the young people enter adult care, a different environment with new faces and ways of working."

For the study, young people were monitored from two years before to two years after the transition to adult care, a transition also known as transition care. The study was based on file reviews and questionnaires completed by the patients. In addition, various care providers were interviewed about their experiences with transition care. Peeters also conducted an observational study in which patients were present at various consultations to see the interaction between patients and care providers. According to the PhD student, this provided important insights: "You see that signals about someone's living conditions and worries are sometimes not picked up, while you would prefer to know what is going on in a young person's head. A good overall picture is extremely important in order to provide optimal support to a patient."

Emphasis on medical aspects

The research focuses on young people with diabetes mellitus type 1, one of the most common chronic diseases among Dutch children and young people. Diabetes is pre-eminently a syndrome in which lifestyle and structure are important because of the importance of regular nutrition and periodic blood sugar measurements. The research shows that healthcare providers pay relatively little attention to other factors. "An intake focuses mainly on medical aspects and less on the overall picture," says Peeters.

In recent years, various practical recommendations have been formulated to improve transition care. These include appointing a transition coordinator to supervise the transition, or offering joint care with professionals from child and adult care. Still, actual implementation lags behind, according to Peeters. "You see that there is still little urgency at a higher level, for example among policymakers or health insurers. Consensus is first needed on what the essential components of transition care actually are. This calls for more evidence regarding the elements that work in transition care and the associated costs.

Comparative research difficult

And that is precisely where the complexity lies, according to the researcher. It turns out to be very difficult to evaluate transition care properly and to determine which aspects contribute to better outcomes at the patient level. Hospitals do devote attention to transition care, for instance, but the way in which this is implemented varies widely, making comparisons difficult. A joint consultation between care providers from child care and adult care is not enough. Good transition care requires a holistic and person-oriented perspective, concludes Peeters.

The PhD student also found it difficult to map out the experiences of patients. Peeters: "Young people are a difficult target group to capture. You can see that in the limited response to questionnaires. We now sent a questionnaire to young people who had switched to adult care two to four years previously and asked them to think back on that period. Ideally, you would like to follow the young people for a longer period after the transition to get a good picture."

Promotion

On 15 March Mariëlle Peeters (Erasmus School of Health Policy & Management) defends her dissertation "Exploration and evaluation of transition care for young people with chronic disorders: Focus on diabetes mellitus type 1" at Erasmus MC.