International Childhood Cancer Day
As part of the global event, Childhood Cancer Switzerland is drawing attention to the challenges in this area. This year the umbrella organisation is focussing on the question of the quality of life for sufferers once they have overcome the illness because cured does not automatically mean healthy. The majority of childhood cancer survivors suffer from late effects and require both medical and psychosocial support. Even though follow-up care has improved over recent years, the challenges in this area remain immense. With Switzerland’s only contact point for survivors, Childhood Cancer Switzerland promotes the interests and needs of those affected.
Every year, approximately 300 children and adolescents are diagnosed with cancer in Switzerland. Thanks to medical advances, the chances of survival have improved significantly in recent decades. Nevertheless, around 80 per cent of survivors suffer from the late effects of the disease and intensive therapy. Whereas in the past the focus was on healing and survival, today it is increasingly on issues concerning the quality of life. “In the 1960s, just one in ten children managed to survive cancer; today 8 out of 10 are cured but the problem of late effects remains. This is why childhood cancer research aims not only at a quantitative but also a qualitative improvement of the chances of survival,” explains Prof. Nicolas von der Weid (MD), Head of Oncology / Hematology at the University Children’s Hospital Basel (UKBB) and President of Childhood Cancer Switzerland.
Reduced quality of life due to late effects
Childhood cancer leaves its mark, often accompanying those affected throughout their lives and, in some cases, massively impairing their quality of life. The type, frequency and severity of these late effects differ from case to case and depend on various factors. They often also only appear decades after the actual disease. Among other things, the internal organs, hormone balance, fertility and cognitive performance can be affected. Further effects include chronic fatigue, concentration difficulties, even depression, and the risk of second tumours. Late effects can thus have a physical, psychological and psychosocial impact on the survivors’ quality of life. In some cases, after overcoming cancer, there are simply no school or career prospects, and there are limits to the survivors’ desire for autonomy and self-fulfilment.
The follow-up care situation in Switzerland
Even though the improvement of the quality of life is increasingly becoming the focus of efforts in childhood cancer research, there is still plenty to be done in the area of follow-up care in Switzerland. And that naturally means that the challenges survivors and their families face are large. Firstly, there is no nationwide, multidisciplinary follow-up care programme and, secondly, access to existing services can prove difficult for some survivors for financial reasons. In addition, the exchange of information in the transition from paediatric to adult medicine does not always run smoothly, and those affected are not always fully aware of the possible late effects: “Because there is no standard, personalised follow-up care, former childhood cancer patients and their families are often insufficiently informed about the risks. The consequences are insecurity, not enough check-ups and poorer chances of recovery if health problems are discovered at too late a stage,” says Zuzana Tomášiková, Head of Childhood Cancer Switzerland’s Survivors’ Centre. Find more information on the offers of the Survivor’s Centre here.
Support for former childhood cancer patients
One of Childhood Cancer Switzerland’s central concerns is improving the situation of former childhood cancer patients. To close existing gaps in care, the umbrella organisation has created a national contact point for those affected. The aim of this contact point, which is unique in Switzerland, is to set up and expand support services for survivors and their families. The Survivors’ Centre advises and provides information to those affected about follow-up care and survivorship. It also organises expert-led and informal networking opportunities as well as conferences and workshops for information and exchange. In addition, it represents the interests of those affected in national and international bodies. The growing number of services now includes free initial consultations on legal matters, in collaboration with Procap, to provide survivors and their families with better legal support. Furthermore, Childhood Cancer Switzerland promotes promising research projects aimed at improving follow-up care and the quality of life. Fin more information on our research support here.