Background: Therapies have improved so much in the past decades that more than 80% of children and adolescents now survive cancer. This means that the population of long-term childhood cancer survivors is growing. Since cancer and its treatments may later have adverse effects, it is important to track and improve survivor health and quality of life. Comprehensive data on the burden of late effects of childhood cancer or risk factors for late effects was not available, and so Switzerland set up the SCCSS to increase knowledge and improve the quality of care and follow-up.
Objectives: The SCCSS investigates long-term outcomes of survivors of childhood and adolescent cancer, and the incidence and spectrum of various somatic and psychosocial outcomes including late mortality, second primary malignancies, somatic health and medication, mental health, educational achievements, health-related quality of life, and the association of these outcomes with risk factors like tumor, treatment modalities, and demographic characteristics. The SCCSS also investigates how health-care is provided, and how long-term childhood cancer survivors take care of their health.
Methods: All Swiss residents who were diagnosed with cancer at age <21 years, have survived at least 5 years since cancer diagnosis, received a detailed questionnaire. The investigators added data from general practitioners and hospital records. To compare survivors with the general population, they also send the questionnaire to the siblings of childhood cancer survivors.
Rationale and significance: The data collected by the SCCSS allows the investigators to study long-term outcomes of Swiss childhood cancer survivors. The SCCSS helps to learn more about the incidence of late effects and their risk factors. It also allows to summarize the current state of care in Switzerland. Since early diagnosis can prevent or mitigate many late effects, tracking them will help to improve the health of current and future childhood cancer survivors.
Current status of the project: From 2008-2017, the investigators have contacted 4140 childhood cancer survivors diagnosed between 1976-2010 and 1508 of their siblings. To date, 2876 childhood cancer survivors and 868 siblings returned the questionnaire. The investigators contact new 5-year childhood cancer survivors at regular intervals, and continuously analyse and publish data and findings. In 2017 the investigators have contacted 1579 childhood cancer survivors for a follow-up questionnaire and will continue with this at regular intervals.
Funding: Swiss Cancer League (Grant No KLS-01605-10-2004, KLS-2215-02-2008, KLS-3412-02-2014, KLS-3644-02-2015, and KLS-3886-02-2016), Bernese Cancer League, Cancer League Zurich, Cancer League Aargau, Kinderkrebs Schweiz, European Union (PanCareLIFE; FP7-HEALTH-2013-INNOVATION-1 HEALTH.2013.2.4.1-3, Grant No 602030). The work of the Swiss Childhood Cancer Registry is supported by the Swiss Pediatric Oncology Group (www.spog.ch), Schweizerische Konferenz der kantonalen Gesundheitsdirektorinnen und -direktoren (www.gdk-cds.ch), Swiss Cancer Research (www.krebsforschung.ch), Kinderkrebshilfe Schweiz (www.kinderkrebshilfe.ch), the Federal Office of Public Health (FOPH), and the National Institute of Cancer Epidemiology and Registration (www.nicer.org).