The PanCareFollowUp Care study data from Belgium, the Czech Republic, Italy and Sweden is collected in a central Data Centre, overseen by Prof. Jeanette Falck Winter of the Danish Cancer Society.
Please introduce yourself and share with us why you joined PanCareFollowUp.
As a medical student, I had a job at the Danish Cancer Society classifying cancer types in children based on original notifications to the Danish Cancer Registry. Finalizing medical school, I got the opportunity to work with cancer research at the Danish Cancer Society and when my director offered me a job assisting him with projects focusing on children with cancer, I decided to stay a year before going back to clinical work. As this research area became so meaning full to me, I decided to dedicate my work life to improve life for children surviving cancer. This year, I have my 25th jubilee at the Danish Cancer Society. For me, it has been a great privilege to work within this research area. Together with colleagues in Europe and the US, we have been able to move this field forward providing new knowledge that has been of great importance for children with cancer and their families and for their health care providers.
This project is a prolongation of two other EU-funded projects focusing on childhood cancer. When I got the opportunity to become a work package leader in PanCareFollowUp, I was happy to accept the invitation.
Explain your work in PanCareFollowUp shortly.
The project is divided into work packages (WP). WP3 is responsible for the PanCareFollowUp data coordination center situated in Copenhagen. The overall aim of WP 3 is to:
- define the type of information that should be collected from survivors and health care professionals during the PCFU Care intervention and analysed to evaluate the person-centred PanCareFollowUp Care intervention
- build and maintain the PanCareFollowUp database monitoring study progress and data quality
- and conduct statistical analyses when data collection is completed and publications on the findings of the PanCareFollowUp Care intervention are to be reported.
The database will be able to track the enrolment of 200 survivors that will be recruited over the next two years in late effect clinics in Belgium, Czech Republic, Italy and Sweden. Further, the database will manage to send out questionnaires to the survivors at predefined time points, keep track on the clinical tests performed at the clinical visit following physical examinations, lab tests and other diagnostic tests to be performed. Further, the feasibility of implementing such a state-of-the-art care intervention within a range of health care settings will be evaluated as well as health economic assessments of the care intervention including benefits and costs.
Why do you think PanCareFollowUp is an important project?
For more than 40 years, it has been clear that lifelong survivorship care is needed for most survivors. Still, long-term follow-up care for childhood cancer survivors has proven challenging across the globe and there is still a great variability in the provision of long-term follow-up programs for childhood cancer survivors. The absence of optimal long-term care for most survivors might be explained by the fact that survivorship care is complex and although different care models have been suggested over the years, improvement in long-term follow-up care is still urgently needed.
In PanCareFollowUp, we will meet this request by setting up state-of-the-art late effect clinics using a new innovative model for integrated care for cancer survivors comprising personalized follow-up care actively involving patients as partners aiming at empower survivors and to support self-management.
What makes this project unique for you?
This consortium gathers highly skilled researchers and clinicians from all over Europe providing optimal conditions to conduct high impact research, which will improve care for adult survivors of childhood cancer across Europe.
PanCareFollowUp includes two interventions – one intervention focusing on providing optimal care to survivors by delivering a person-centered approach to survivorship care based on international clinical guidelines for surveillance of late effects – and one intervention to promote a healthy lifestyle.
Thus, this project is very translational the way that the research conducted will have a direct link to the clinic and most importantly to the survivors.
What do you hope this project will achieve?
I hope that we with the person-centered PanCareFollowUp interventions will be able to demonstrate a huge impact by being able to empower survivors to become partners in their own care leading to improved well-being and health outcomes.
What’s the biggest challenge of your WP?
The biggest challenge for WP3 has been to set up data in, for us, a new cloud-based database, where we had to learn how to build up the database from scratch. Being the last ´wagon in a long train‘ of tasks conducted by different WPs, we were not able to conduct the most demanding tasks within our WP entering all data into the PanCareFollowUp database before several other WP leaders have ended their work. First when all data are included in the PanCareFollowUp database, the enrolment of childhood cancer survivors into the four clinics can start.
What’s the most fun thing in your WP?
Working together in big consortia with colleagues from different countries and with different types of expertise, is a great inspiration from me. When I started up working within this research field decades ago, collaboration across countries were not very common.
At that time, we were often doing parallel studies – sometimes even publishing studies in the same journal at the same time occurred. One example is a study, I did together with Nordic colleagues in 2001 focusing on late mortality among five-year survivors of childhood cancer. The paper was published in the Journal of Clinical Oncology in 2001 in the same issue of the journal as a study from the US on the same topic and with a remarkable similarity in overall results. Both studies reported that 5-year survivors of childhood and adolescent cancer had a 10.8-fold risk of death when compared with the general population – a risk that fortunately has decreased in more recent eras.
Later we started to join forces building up cross-country collaborations. In 2010, we set up a Nordic study focusing on late effects in childhood cancer survivors. Later, funding was provided by EU to support large consortia with colleagues from all over Europe and now also more formal studies are set up involving also researchers and clinicians from the US.
What’s the most important benefit of your WP for survivors?
When the enrolment of the 800 adult survivors has been completed with all data entered into the PanCareFollowUp database, unique data will be available to conduct state-of-the-art research that hopefully in the future will prevent that the increasing numbers of successfully treated children do not become the chronically ill adults of tomorrow.
What else do we need to know about you or is there anything else you want to share?
The overall goal of my research is to provide every childhood cancer survivor with better care and better long-term health so that they reach their full potential, and to the degree possible, enjoy the same quality of life and opportunities as their peers.
With this European PanCareFollowUp project, I do hope and believe that we will get a step closer towards this goal.