It should be easier for people to live with long-term after effects if they have had cancer in their childhood or youth. Associate professor Hanne Cathrine Lie plays an important role in a European innovation programme tasked with developing the digital tool e-QuoL.
Associate professor Hanne Cathrine Lie is responsible of developingthe psychosocial tool to help young people who have had cancer. Photo: Anne Wennberg, UiO
Hospitals focus primarily on saving lives but we have long known that long-term after effects of cancer exist and can be challenging to live with. After effects can take the form of physical or mental health problems caused by the cancer or the treatment and that persist for a year or longer after the cancer treatment has ended.
- Young cancer survivors need support in order to help them live with these problems and the aim is to systemize what we know about this challenge, says Lie.
eQuoL will be a personalized tool
The new e-tool will focus on supportive care and quality of life and will be based on personalized recommendations for screening and on research involving young people who have had cancer and their families. In addition, associations, networks and health institutions will be used to create a personalized e-health tool. Further, eQuoL will be able to offer medical follow-ups, guidance on preventive measures and mental and social support.
5.9 million Euro from the Horizon Europe programme have been awarded to the work on e-QuoL, which stands for Equality in Quality of Life.
Good international collaboration on cancer in children and young people
Every year, 35,000 children, adolescents and young people in Europe are diagnosed with cancer. Currently, 80 per cent of them survive for at least 5 years, but the intensive treatments lead to many of them suffering from after effects and diminished quality of life.
There is a good level of international collaboration in the field of cancer amongst children and young people because relatively few in this age group get cancer.
16 European countries are participating in this innovation programme, which began in January this year, and experts from many different disciplines are contributing: oncologists, psychologists, neuropsychologists, patient organisations and industry.
An aid for both healthcare professionals and for young people who have had cancer
- What we are doing is further developing an existing tool for adult patients with cancer and that can for example be accessed on a tablet or mobile telephone. We will create new content targeted at young people who have had cancer and ensure that the content is put to use, says Lie.
There are two sides to this tool: information to health professionals tasked with following up patients with a risk of developing long-term after effects on the one hand, and psychosocial follow-up of young people who have had cancer on the other.
Hanne Cathrine Lie is responsible for developing both the content and the format of this psychosocial tool and for making sure that it is tested at Oslo University Hospital. The project will run for four years and testing will begin in two years' time.
