PanCareFollowUp – the goal is personalised care in dialogue with the patient

The PanCareLIFE project, which aims to improve the quality of life for children and young patients cured of cancer throughout their lives, continues with the follow-up project entitled PanCareFollowUp that is supported by the European Union’s Horizon 2020 programme. The International Clinical Research Centre at St. Anne’s University Hospital in Brno (FNUSA-ICRC) became a member of this project’s research consortium, and the first research meeting was held in Brno.

Nowadays, modern medicine is able to cure more than eighty percent of paediatric cancer patients, which is a leap compared to recent history. From the commonly used milestone of the so-called five-year survival – i.e. a patient was considered cured or in long-term remission after five years without recurrence of the disease – the point of view more often turns to long-term survival and its quality. Most cured patients are disadvantaged throughout their lifetime due to late effects caused by chemotherapy, radiotherapy or the disease itself, including fertility problems, metabolic or hormonal problems, heart problems and others. They have also been found to be generally more frail, i.e. their health after the age forty corresponds to that of the “healthy” population at 60.

In 2016, a tertiary-prevention outpatient department was therefore established within the Department of Oncological Surgery (OCHO) at FNUSA-ICRC for the long-term follow-up monitoring of late effects, which is intended for former patients of the Paediatric Oncology Department of the University Hospital Brno after attaining eighteen years of age. “OCHO provides highly specialised preventive and curative care to patients who have been treated for cancer in their childhood,” explains MUDr. Tomáš Kepák, a clinical oncologist on the Paediatric Oncology Translational Research team at FNUSA-ICRC. “Also, it is a specialised research institution that carries out and will carry out research on these patients’ health and quality of life.” For example, close collaboration with the Cellular and Molecular Immunoregulation research team is already underway (within the ENOCH project), focusing on research into premature ageing of cells.

These activities have contributed significantly to making FNUSA-ICRC one of four clinics where the research part of the PanCareFollowUp project will take place. Apart from the Brno-based institution, which works on the projects with the University Hospital Brno’s Paediatric Oncology Department, the PanCareFollowUp project also includes clinics in Leuven, Belgium, Genoa, Italy, and Lund, Sweden – a total of twelve countries are involved, the main coordinator comes from the Netherlands. “The project’s first key objective will be to develop comprehensive guidelines, i.e. procedures to determine which preventive care exactly to choose for each individual patient,” says research coordinator Mgr. Kateřina Kepáková. “Based on these guidelines and a discussion with the patient on their needs, everyone should then have their own lifelong preventive screening plan that has been optimally set. The outcome should be high-quality prevention of individual health risks on the part of patients, their active involvement in caring for their health, and of course, financial savings for the health system. Through the introduction of this PanCareFollowUp care model, we will have direct access to the very best that is produced in the area of late effects in paediatric oncology.” The initial phase is currently underway; the most important thing, i.e. the completion of a set of guidelines and their testing and evaluation at four research clinics, will take place in 2020–2021.

The information to evaluate the PanCareFollowUp model of care will be obtained through a questionnaire survey, both among patients, attending medical staff and clinic/department management. The data obtained will then be evaluated in Switzerland, which is also a member of the project, and a measurement of the cost of care will be carried out. “The project also includes a pre-implementation study,” adds Kepáková. “This will be a series of interviews with doctors about current practice, potential problems will be identified and, of course, patients will be interviewed as well.” Other participants will also take part in these interviews, for FNUSA-ICRC this will be e.g. prof. MUDr. Ondřej Ludka Ph.D., who is engaged in research and clinical cooperation with doctors from the OCHO outpatient department, for example on the Onco-Heart project.

In November, another discussion with former patients will be held as part of the study. “In our cohort, i.e. the group from which we will select two hundred patients for the PanCareFollowUp questionnaire survey, there are patients from the database of the Children’s Hospital of the University Hospital Brno, patients who have been lost from monitoring (those who we have actively sought out) and also patients who have registered on their own,” adds Kepáková. “At this point, I would like to thank the Together for a Smile (Společně k úsměvu) association, who have worked with us very closely and actively.” We should perhaps briefly explain that the Together for a Smile association brings together young people who have one thing in common – they defeated cancer in their childhood and are currently helping those who are fighting it now, among other things by sharing their experience. The chair of the association, Mgr. Lucie Štrublová, cooperates with the OCHO outpatient department with her own research project entitled Nutrice CCS 2017, which is implemented by FNUSA-ICRC and focuses on specialised nutrition counselling for patients cured of childhood cancer.