Childhood Cancer Day Doctors can save as many as 85% of ill children, yet many of them suffer from consequences when they are older
Press Release, 12 February 2019
15 February is International Childhood Cancer Day. In the Czech Republic, as many as 400 children undergo treatment for cancer every year. Causes of cancer in children remain largely unknown. Moreover, tumours in young patients tend to be aggressive and grow fast. Thanks to the results of research in children's oncology, doctors can save almost 85% of ill children. However, they often have to cope with consequences of the treatment when they are adults. New findings have been coming from the Pediatric Oncology Translation Research (POTR) which was set up in the International Clinical Research Centre at St. Anne’s University Hospital in Brno (FNUSA-ICRC) and is headed by Professor Jaroslav Štěrba.
POTR's outpatient department provides follow-up care for pediatric oncology patients.
They beat cancer when they are children, but they often have to face the consequences of their treatment when they reach adulthood. There are only two outpatient departments in the Czech Republic that help cancer survivors with follow-up care. One of them is part of the larger Pediatric Oncology Translation Research team (POTR) at the International Clinical Research Centre at St. Anne's University Hospital in Brno (FNUSA-ICRC).
The Late Effects Surgery opened in Brno in autumn 2016 and provides clinical care as follow up to the care that was provided when the patients were children. While until the age of nineteen, follow-up care is provided by the centres where the patient was treated, i.e. Children´s Hospital in Brno and Motol University Hospital. Active monitoring does not continue for many patients once they reach adulthood. “Sometimes we treat young children who do not even remember having cancer, but it is essential that they are aware of this risks and pay attention to follow-up care once they grow up,” says MUDr. Tomáš Kepák from the POTR team. As part of the transition from their pediatric specialist to adult medicine, patients are transferred to a follow-up oncology surgery at FNUSA-ICRC where they receive an individual follow-up care plan.
There are between 350 and 400 children and young people under the age of 19 being treated for cancer in the Czech Republic each year and almost 85% of them recover. However, this does not mean that their fight with the disease is over, as most of them suffer from some side effects of the treatment. “Recovered child oncology patients may have problems with the heart, thyroid, lungs, kidneys or their growth. Some of them may face fertility issues and many of them suffer from anxiety,” explains Kepák of some of the effects.
For some pediatric oncology patients, the treatment can cause problems with organ and brain functioning when they reach adulthood, while some cancer survivors may experience difficulties with learning or end up in a wheelchair because of physical disabilities. Some of them even begin receiving disability payments at the age of twenty.
There is a very wide range of different side effects and therefore, every patient requires customized health care that will enable him or her to live the best possible quality of life, which is the ultimate goal of all the POTR team’s research projects. “Follow-up care should be centralized in workplaces that have experience with pediatric oncology, it should be life-long because consequences may appear several years after treatment and it should be linked to research,” adds Kepák.
Before the surgery in Brno opened, many patients were lost in the follow-up care system. “They would experience hours of waiting and helplessness in their general practitioner´s waiting room. You know that you are not getting the care you need, but you are not exactly sure what you need because you are not that familiar with the human body and your problems are hard to describe,” explains Mgr. Lucie Štrublová, who is personally in charge of long-term oncology treatment and now works as a nutrition specialist in the surgery. She is also the chair of the Together for a Smile association, where young cancer survivors engage with one another. The association strives to raise awareness of follow-up care it also helps cancer patients and their families.
Mutual communication and sharing experience among the patients helps those who are coping with the psycho-social effects of their treatment, such as anxiety and depression. “It is also important to communicate with cured patients, as their needs should lead and drive changes. We want to do our work in the outpatient department well and with the help of our team, move the state of knowledge further,” concludes Kepák.