Akademiliv

Sahlgrenska akademins nyheter

På Svenska
University of Gothenburg Logotype
  • News
  • Notices
  • Calendar
  • Grants
  • About Akademiliv

Empowering adolescents with heart disease for better transition to adult healthcare

16 May, 2016

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

By: Elin Lindström
Tagged With: institutionen för vårdvetenskap och hälsa, Samverkan

Add your own events in the Akademiliv Calendar

Johan Reutfors: Risk factors and consequences in difficult-to-treat depression – results from Swedish registry studies

Hybrid meeting – in Assembly Room Birgit Thilander (NOTE the venue!) or online via Zoom.

  • Hybrid webinar 15:00-16:00, Thursday June 8th.
  • Link to Zoom webinar.
  • Sahlgrenska Academy Science Seminars – see full program in the Staff Portal.

Information from Sahlgrenska Academy Research Support Office

[UPDATED MAY 23]
The Sahlgrenska Academy Research Support Office provides an overview of upcoming and current calls, nominations and events in an information letter. This letter is updated approximately four times per semester.

’20 minutes for researchers’ is back – see full spring program

During 20 minutes over Zoom, the Biomedical Library gives tips on tools and services that can facilitate your research everyday life.

Akademistatistik helps you with your statistics

Akademistatistik offers statistical and health-economic expertise to researchers and PhD students working at Sahlgrenska Academy and in the Region Västra Götaland. Here you can get advise in all aspects, from project formulation to the analyses required for journal publication.

  • If you want to make an appointment please use their online booking system.
  • Further information on Akademistatistik can be found on their homepage.

We are building at Medicinareberget

You will now find comprehensive information on construction projects that affect the Sahlgrenska Academy in the Staff Portal.

Lunch menus

Café Anatomen
Menu not available on website.

Café Annedal
Menu not available on website.

Lunchen.nu

Lustgården på Änggårdsbacken
Take away for external guests between 11.00-12.30 weekdays.

Lyktan

Mersmak Mölndal

Mersmak Sahlgrenska

Mersmak Östra

Salt & Syra

More news

High distinction for rheumatology research

2 June, 2023

DISTINCTION. The Department of Rheumatology and Inflammation Research at the Institute of Medicine, University of Gothenburg, has been designated …  

Unhealthy food dominated grocery store flyers

31 May, 2023

NEW STUDY. Unhealthy food dominated the weekly grocery store flyers. As much as two thirds of the space was taken up by less healthy foods …  

Magnus Gisslén new Chief Epidemiologist at Public Health Agency

31 May, 2023

POSITIONS. Magnus Gisslén, Professor of Infectious Diseases at the University of Gothenburg, is to be the Government’s new Chief Epidemiologist at …  

Congratulations to Kaj Blennow on high world ranking in neuroscience

30 May, 2023

DISTINCTION. Kaj Blennow, Professor of Clinical Neurochemistry at the University of Gothenburg, ranks 17th worldwide among all researchers in …  

Blood tests can show brain impact of neurosurgery

30 May, 2023

NEW STUDY. Damage to the brains of patients operated on for brain tumors may be assessed by measuring biomarkers in the blood pre- and …  

New method clarifies interplay between proteins and DNA

29 May, 2023

NEW STUDY. A research group at the University of Gothenburg has developed a method that makes the exact binding sites of specific proteins in the …  

Recipients of ALF educational grants

29 May, 2023

EDUCATIONAL DEVELOPMENT. We now know who has been awarded educational ALF grants for the 2023–2024 medical program and educational ALF grants for …  

See the pictures from the awarding of the Assar Gabrielsson prize in 2023

29 May, 2023

AWARDS. Assar Gabrielsson's prize is awarded for 2023 to two excellent doctoral theses in cancer research within Region Västra Götaland. Now you c …  

Vulvovaginal symptoms common in women taking penicillin

29 May, 2023

NEW DOCTORAL THESIS. Markedly often, women who take penicillin for strep throat suffer from vulvovaginal symptoms, and in both sexes, diarrhea is …  

Major investment in innovation cluster energizes GoCo House inauguration

26 May, 2023

COLLABORATION. With applause and gold confetti, GoCo House — the heart of GoCo Health Innovation City — has now been inaugurated. Simultaneously, …  

More news...

Sahlgrenska Academy

© University of Gothenburg
PO-Box 100, S-405 30 Gothenburg, Sweden
Phone: 00 46 31 786 0000

About the website

Elin Lindström is editor for Akademiliv.
Please feel free to send your ideas and comments to akademiliv@gu.se

Sign up for the Akademiliv newsletter:

Send you tips to Akademiliv

Do you have a suggestion for news, grants, seminars or an education?
Send an email to Elin Lindström Claessen