In this interview, we meet Jeroen te Dorsthorst and Dr. Edit Bardi from the PanCare network.
Please introduce yourself and share with us why you joined PanCareFollowUp.
I am Edit Bardi. I am pediatric hematooncologist and immunologist and also a co-founding member of PanCare. My dream was to develop the best possible long term follow up for children with cancer and for young adults, who has been children previously.
I am Jeroen te Dorsthorst and I am working for PanCare as project and communication manager. Within PanCare, I am keeping track of the website and social media and am involved in all kinds of membership tasks. Within PanCareFollowUp, I am mainly involved in work package 6: Communication and Dissemination, contributing on the communication of the project to both a professional audience and survivors in all kinds of ways.
Explain your organisation and your role in PanCareFollowUp.
PanCare is a multidisciplinary pan‐European network of professionals, survivors and their families. We work on long-term follow-up care, guidelines and are a resource of research based information concerning all late side-effects of cancer treatment. An important aim of PanCare is to work with the European Community to increase awareness and research about childhood cancer survivors. Next to this we work on the empowerment of survivors by conducting research, creating guidelines and spread knowledge about late effects and survivorship.
Why do you think PanCareFollowUp is an important project?
Many survivors across Europe are facing late effects of their childhood cancer treatment, affecting their lives. It is very important that all survivors in Europe have equal access to optimal long-term follow-up care. PanCareFollowUp will improve the quality of long term follow-up with the help of the latest knowledge and recommendations but also taking into account the view of survivors who will receive this care. PanCareFollowUp will also contribute to the empowerment of survivors which will help them to be a more active participant in their own care.
What makes this project unique for you?
PanCareFollowUp gives us the opportunity to implement the guidelines
The survivors will receive their Survivorship Care Plan, which can empower them to achieve the best possible long term follow up, gaining more control over their own care process.
Survivors are really involved in this project and provide feedback which helps to keep the goal of the project in mind: Better follow-up care and quality of life for all European survivors.
What do you hope this project will achieve?
We hope that PanCareFollowUp will contribute to equal access to long-term follow-up care for every childhood cancer survivor in Europe, thus helping the survivor to receive the best care and by this also contributing to the quality of life of childhood cancer survivors.
What’s the biggest challenge of your organisation in PanCareFollowUp?
Connecting all different participants within PanCareFollowUp and making sure everything is organised in the best possible way taking into account so many countries and stakeholders.
What’s the most fun thing for you in PanCareFollowUp?
It is really nice to work together with so many fantastic people from all over Europe and learn from each others experiences and challenges from different viewpoints and backgrounds in every day life.
What’s the most important benefit of your participation in PanCareFollowUp?
A personal benefit of this project is that the projects allows us to learn from many other experts, suvivors, families etc.
Next to this, we are convinced that PanCareFollowUp will help PanCare to come closer to our main mission: To ensure equal access to optimal long-term care and to improve quality of life for every child and adolescent in Europe after their cancer treatment.