Meet the Clinic members from KU Leuven!

In this interview, we meet the clinical team from KU Leuven, which includes Anne Uyttebroeck, Marleen Renard, Monique van Helvoirt, Tom Brié, Saskia Van Deun, Jurgen Lemiere, Trui Vercruysse, Sofie Prikken. The multidisciplinary team is composed of a pediatric haemato-oncologist, Head of Department (PHO), late-effect specialist, pediatric endocrinologist, data manager, neuro-psychologist and clinical psychologists.

Why did you join PanCareSurPass?

Actually, we are participating in the Horizon 2020 PanCareFollowUp project and we noticed how important a follow-up Care Plan is for Childhood Cancer Survivors.

However, we’re aware of the limitations of the paper version of the Care Plan that we are drafting in the PanCareFollowUp project. A digital version of the plan included in the Survivorship Passport as a living document will, in our opinion, be even more valuable to the survivors.

Introduce your clinic shortly.

University Hospitals Leuven are ranked 45th in the world. The Department of Paediatric Haematology and Oncology is a member of the Leuven Cancer Institute (LKI), established as part of the University KU Leuven and University Hospitals Leuven. It is one of the largest Paediatric Oncology units in Belgium. Each year, about 100 new patients are diagnosed with childhood cancer.

It has a separate unit with 20 beds, 6 SCT isolation rooms, day care hospital and ECT unit and it also has a Proton centre. It participates as a full partner in PaedCan ERN and is an expert centre with JACIE/stem cell transplantation accreditation.

We have a long history of a dedicated late-effects clinic which provides follow-up care for 250-300 survivors each year.

Why do you think PanCareSurPass is an important project?

In 2019, we started with the Horizon 2020 project PanCareFollowUp. In that project, the goal for UZ Leuven is to provide 200 childhood cancer survivors, treated between 1980 and 2005, with a paper version of a survivorship passport, containing diagnosis, cancer treatments and recommendations for long-term follow-up. In PanCareSurPass, we move from paper to digital. A digital passport will be a next important step to provide a living document for the survivors to share with their health professionals.

Survivors are enthusiastic to learn about their medical cancer history and the possible late effects of their treatment. Sometimes it is a relief to them to understand that some of their health problems are related to the former cancer treatment. Survey of possible late effects is for these survivors also an important issue.

What makes this project unique for you?

The intensive cooperation with dedicated persons with different professional background from many European countries is inspiring. Together one gets a lot done!

What do you hope this project will achieve?

We hope the project will achieve:

• Empowerment of survivors
• Prevention and early detection of late-effects
• Improvement of Quality of life

What’s the biggest challenge for your clinic?

A challenge is the IT support to overcome the many barriers that arise in creating a digital version of the Survivorship Passport as much as possible.

What’s the most fun thing for you in PanCareSurPass?

Working together with an enthusiastic team which takes up the difficult challenge of creating a digital document that can be of value to many survivors.

What’s the most important benefit of your work in PanCareSurPass for survivors?

We hope to achieve the possibility of creating a digital Passport in our hospital IT system and by extension in other hospitals in Belgium.

What else do we need to know about your clinic or is there anything else you want to share?

Thank you, to everyone committed to this important project and to all healthcare providers providing care for childhood cancer survivors and  paying attention to their physical and mental well-being.