In this interview, we meet Dr. Lars Hjorth of Lund University. Lars is leading the cohort study of the PanCareFollowUp Care intervention, which is being run in Sweden, Italy, the Czech Republic and Belgium.
Please introduce yourself and share with us why you joined PanCareFollowUp.
I am a paediatric oncologist with a long-standing interest in late complications after treatment for childhood cancer, both in children and adolescents as well as in adults. I co-founded the PanCare network with committed colleagues in 2008 and was the chairperson until 2017. Between 2011 and 2017, I coordinated the PanCareSurFup project that looked at late mortality, second neoplasms and cardiotoxicity in addition to producing guidelines for long-term follow-up. In Lund, I co-run the late effects clinic that has been in operation since 1987 when it was started by Professor Stanislaw Garwicz and Professor Eva Ståhl.
Explain PanCareFollowUp shortly.
The project is divided into work packages (WP). WP2 is focused on a prospective cohort study in four late effects clinics in Europe; Brno, Genova, Leuven and Lund. Each clinic will recruit 200 survivors over a 2-year period into a follow-up program based on person-centred care.
As professionals we believe that follow-up is important and makes a difference to our survivors but less is known on the value of follow-up from the aspect of the survivors themselves. This will be evaluated with several questionnaires delivered before, during and after a follow-up visit to one of the late effects clinics.
Survivors will receive a treatment summary based on the cancer treatment received. With this information an individualised Survivorship Care Plan will be developed that guides follow-up care based on guidelines and the individual plan.
Why do you think PanCareFollowUp is an important project?
Adequate and correct information to former childhood cancer patients is important to understand the possible risks that can occur based on the treatment they recieved for cancer.
Without this knowledge, the survivors cannot access or understand the recommended follow-ups that they ought to be doing. Next to this, the health care system has no complete knowledge if the follow-up is of value or not, thus we may be providing the wrong kind of follow-up to our survivors.
What makes this project unique for you?
The unique thing of PanCarefollowUp is that we are asking the survivors themselves about the value (or not) of a person-centred follow-up care.
What do you hope this project will achieve?
Optimally, PanCareFollowUp will confirm what we think we know, i.e. that follow-up care is both wanted and necessary and that it makes a difference to the survivors.
What’s the biggest challenge of your WP?
A challenge, although not a big one, is to have all four centres agree on the procedures and running of the study. So far (after 1,5 years of the project) everything is running well, albeit with delays that are due to the Covid-19 pandemic as none of the clinics are allowed to recruit patients at this time and no one knows when we will be allowed to see our survivors back in the clinics again.
What’s the most fun thing in your WP?
As always in European collaborative studies, working with old and new colleagues committed to the same goal, to provide optimal long-term care to former childhood cancer survivors, is the best part of all. If we can then prove that the proposed follow-up also is percieved as beneficial by our survivors, then it is even better.
What’s the most important benefit of your WP for survivors?
If a successful and proven model for long-term follow-up care of former childhood cancer patients can be achieved and later rolled out into other centres in Europe much will have been gained for the benefit of the survivor communities.
What else do we need to know about your WP or is there anything else you want to share?
The PanCare network has its third EU-financed project with PanCareFollowUp after PanCareSurFup and PanCareLIFE (focusing on fertility, ototoxicity and quality of life). Being the vibrant and active network as it is, I am sure that PanCare will continue to be an active and leading part in survivorship issues in general and in research questions in particular. The signed Memorandum of Understanding between PanCare, SIOP-Europe and CCI-Europe is a testament to this on-going work on behalf of former childhood cancer patients, both in childhood and adolescence as well as in adulthood.