In this interview, we meet Tomáš Kepak & Kateřina Kepaková from the team at the St. Anne‘s University Hospital clinic in Brno, Czech Republic.
Please introduce yourself and share with us why you joined PanCareFollowUp.
We are a team from university hospitals in Brno, the Czech Republic. We are a twin brother and sister, Tomáš and Kateřina. Tomáš is a paediatric oncologist from the Children‘s Hospital of the University Hospital Brno, a founder of a follow-up clinic for childhood cancer survivors at St. Anne‘s University Hospital in Brno (FNUSA-ICRC) and a late-effects specialist there. His long-term interests as clinician and researcher are in the quality of life of survivors. Kateřina is a research projects coordinator at the same institutions. Tomáš is a founding member of the PanCare society and Kateřina has joined PanCare as a member about six years ago.
We joined the project because it stands for the same principles and has the same objectives that we have: continuous effort to improve the quality of care for childhood cancer survivors, real partnership between healthcare professionals (HCPs) and survivors, sharing of best-practice across Europe, harmonisation of procedures across Europe, implementation of treatment summary and survivorship care plan into routine practice.
Introduce your clinic and how long-term follow-up is organised in your clinic/country.
The follow- up clinic for childhood cancer survivors at St. Anne‘s University Hospital in Brno (FNUSA-ICRC) was founded in 2016 and is the only specialised follow-up clinic for childhood cancer survivors over 18 years of age in the Czech Republic.
Long-term follow up is usually available only at the paediatric clinic where the survivor was originally treated for childhood cancer in the Czech Republic. This is not ideal especially when referrals to adult medicine specialists are needed in follow-up care.
Why do you think PanCareFollowUp is an important project?
PanCareFollowUp has the ambition to initiate a pan-European change of the whole system of care for cancer survivors. The project is very systematic in its approach and tries to create a truly complex and thought-through model of care. Next to this it educates physicians to listen to survivors as much as possible.
What makes this project unique for you?
The same things as those that make the project important 😊
In addition, the ambition to measure economic efficiency of the model of care is very unique and may bring novel data that are not usually collected in health-related research projects.
What do you hope this project will achieve in general?
We hope it will succeed in developing an efficient complex of recommendations and guidelines that will provide a clear guide for personalised care for survivors.
We hope that the project will win survivors‘ trust and that survivors will embrace it as helpful and friendly and possibly provide feedback on how to further improve the model for use in practice.
We hope the project will collect convincing arguments about the advantages of the model of care in order to get on its side hospital managers and HCPs from late effects clinics – both those involved in the project implementation and other ones, so that it‘s realistic to hope that the model will be adopted by many clinics in the future.
What will this project add to long-term follow-up care in your clinic/country?
It will bring tools and incentives to systematically implement treatment summaries and personalised care plans in routine follow-up care practice. It may bring arguments for hospital managements and health insurance companies to support establishment of long-term follow-up clinics in the country and to stabilise them financially. It will hopefully (further) increase survivors‘ trust that their needs are being taken seriously and they are being listened to and help improve their long-term health, well-being and quality of life.
What will be the most important benefit for survivors in your clinic/ country?
Adding to the points mentioned before, the PanCareFollowUp project will also give survivors a unique opportunity and forum to express their wishes and give a rather detailed feedback on how they feel as clients of follow-up care.
The quality of follow-up care sometimes depends on the personality of the late-effects clinic‘s physician. By making care systematic and based on a structured model, the project strives to guarantee the same level of care to every survivor.
What’s the biggest challenge for your clinic in PanCareFollowUp?
The biggest challenge will be to establish a smooth system of referrals for specialised examinations for survivors.
What’s the most fun thing for you in PanCareFollowUp?
Collaboration with all of the team, great and inspirational people!
And still closer friendship with the clinic‘s survivors.
We‘re very curious to see the project‘s research results one day! Especially in terms of survivors‘ empowerment outcomes, survivors‘ views and feedback, healthcare professionals‘ views and feedback and the economic cost analysis.
What’s the most important benefit of your work within PanCareFollowUp for survivors?
Next to the benefits for our clinic and country, the project will allow us to make an extra effort to track some long lost-to-follow-up survivors who will benefit from the offer of follow up care.
By streamlining long-term follow-up care, the project may help reduce costs (also for survivors themselves) and increase chances to early identify health risks and to better manage possible late effects.
What else do we need to know about your clinic or is there anything else you want to share?
Thank you to our survivor representatives for the great job you are doing!