RESEARCH. A randomized multi-center study for testing a new structured and person-centered work method for improving the transition from pediatric healthcare to adult healthcare for adolescents with congenital heart disease is now starting. The Research Director is Philip Moons, a Belgian guest professor at the Institute for Health and Care Sciences.
“During our teens, we all wrestle with difficult questions about our identity and future. Living with a chronic disease does not make going through the development from child to adult any easier. In the middle of the chaos that being a teenager can mean, it is expected that you will take on the responsibility for your own disease from your parents,” says Philip Moons
Every year, approximately one thousand children are born with heart defects in Sweden. Thanks to improved treatment methods, most of them reach adulthood. When children come of age, they are transferred to adult healthcare, for continued medical follow-up.
“The transition from pediatric to adult healthcare risks the consequence of the patient losing contact with healthcare, intentionally or unintentionally, which in turn increases the risk of complications. There are programs for facilitating the transition from pediatric specialist care to adult healthcare, but evidence is lacking on how effective the programs actually are,” says Philip Moons, Professor in healthcare at the university in Leuven, Belgium.
Foothold for young people with heart disease
For the past two years, he has also been a guest professor at the Institute for Health and Care Sciences, where he is the Scientific Director for the Stepstones research project. It is a new research program on how the transition from pediatric healthcare to adult healthcare can be improved for adolescents with chronic heart disease.
After careful consideration, an intervention study will soon be initiated in Stepstones to evaluate a person-centered transition program for adolescents with congenital heart disease. Ewa-Lena Bratt a PhD researcher from the Institute for Health and Care Sciences and Associate Professor Carina Sparud Lundin also work with the project. Within the program, adolescents receive support in becoming an active partner in their own care through increased empowerment and personal responsibility.
A randomized study in several cities
Four university hospitals in Sweden will participate in the study – Gothenburg, Lund, Stockholm and Umeå. Right now, research nurses are being trained for the study, and starting in May, patient recruitment will begin. At two units, young people with heart disease will be randomly assigned to either the intervention group, which means that they will follow a structured two-year transition program or to a comparison group, which will receive the care the patient group usually gets.
“The other two units will function as a control group where the study participants will receive traditional care according to current routines. The design is necessary in order for us to be sure of having a control group that is not contaminated. A control group that is in close proximity to an intervention group can otherwise pick up what is happening and change their care program themselves,” says Philip.
The target of the initial study is to investigate if a transition period increases teenagers’ participation and responsibility for their own disease.
“People who are empowered are more informed and make better decisions. Studies show that increased empowerment leads to fewer complications and reduced mortality.”
Adolescents in the study will be 16 years old when they are recruited and, initially, will be followed until they are 18 years old. The hope is to be able to continue to follow the study participants to see the long-term effects of the transition program. In the future, the researchers also would like to investigate the economic consequences on healthcare – how would it effect the budget for Swedish healthcare, if similar programs were instituted for all young people with heart disease?
At this time, the project has employed a PhD student who will dispute at both the University of Leuven and at the University of Gothenburg, and, thereby, receive a dual doctoral degree. Another PhD student will be accepted into the project with the same structure.
Several major grants
Philip Moons and his research colleagues at Stepstones have been highly successful with applications to several research financiers. The Swedish Research Council gave the project SEK 6 million, last fall and in addition, Stepstones has received significant grants from both Forte and the Swedish Heart-Lung Foundation.
“When a young person is ready to leave pediatric healthcare and enter healthcare as an adult, problems can arise and that is why it is of utmost importance that the transition functions as it should,” says Philip Moons.
On an international level, patients who have outgrown pediatric cardiology often need to seek a new cardiologist on their own as an adult, which can have major consequences. Multinational studies show that, from an international perspective, long gaps in care are common between adolescence and adult life, something that Philip Moons has shown is not as common in Belgium.
“In many countries there exists a major problem with patients not going to their followup examinations. We still do not know what it is like in Sweden, but that is something we are also planning to study at Stepstones,” he says.
When I ask Philip about his impressions of Gothenburg and Sweden, he answers that Sweden seems to invest more on healthcare research than most other countries.
“Sweden, and especially Gothenburg, have come far in person-centered care. We are far behind in Belgium, and that was one of the most important reasons for my accepting the guest professorship here,” he says and continues,
“The Institute for Health and Care Sciences is a major institute, significantly larger than my institute in Leuven. I am impressed by the management and the investments in future development that are made here. It requires vision to invest strategically at the level the Institute does.
FIND OUT MORE
Find out more about Project Stepstones at: http://www.stepstones-project.org/sv/
For more information about Philip Moon’s research program at Leuven, go to: http://www.kuleuven.be/switch2/
To visit Philip Moons’ personal website, go to: http://philipmoons.weebly.com/
TEXT AND PHOTO BY ELIN LINDSTRÖM CLAESSEN