Swiss Childhood Cancer Survivor Study (SCCSS)

The SCCSS is designed to investigate the long-term effects childhood cancer and its treatment have on survivors, and includes those who were under 21 when they were diagnosed. The SCCSS explores survivors’ quality of life, the health care received by children with cancer and during follow-up, the effects of medication, somatic and psychosocial health issues, how survivors take care of their own health, and also collects demographic details like family background, education and profession. To learn more about these topics, we send questionnaires to childhood or adolescent cancer survivors; to date, we have received completed questionnaires from almost 3500 persons. We use the results to inform physicians and patients, and to improve treatment of childhood cancer and follow-up. We publish our results in peer-reviewed medical journals (mostly read by physicians), as well as shorter versions on our website.

The SCCSS is funded by Swiss Cancer League, Cancer Leagues of Aarau, Bern and Zurich, Kinderkrebshilfe Schweiz and the European Union.

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 survivors is growing. Since, cancer and its treatments may later have adverse effects, we need to track and improve survivor health and quality of life. Unfortunately, we do not yet have comprehensive data on the burden of late effects of childhood cancer or risk factors for late effects, and so Switzerland set up the SCCSS to increase our knowledge and improve the quality of care and follow-up.

Objectives: 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 tumour, treatment modalities, and demographic characteristics. SCCSS also investigates the way health-care is provided, and the ways long-term survivors take care of their health.

Methods: We use a prospective cohort study, which is based on the population of children and adolescents registered in the Swiss Childhood Cancer Registry. All living individuals who were diagnosed with cancer at age <21 years, have survived at least 5 years, and who were Swiss residents when they were diagnosed, are eligible for the study. We send a detailed questionnaire to all these survivors, and also add data obtained from general practitioners and hospital records. So we can compare survivors with the general population, we also send the questionnaire to the brothers and sisters of childhood cancer survivors.

Rationale and significance: The data collected by the SCCSS lets us study long-term outcomes of cancer in Swiss children who survive it. It helps us learn more about the incidence of, and risk factors for late effects, and to summarize the current state of care in Switzerland. Since early diagnosis can prevent or cure many late effects, tracking them through this study will help improve the health of current and future survivors of childhood cancer.

Current status of the project: From 2008-2014, we have contacted 4116 survivors and 1508 of their brothers and sisters. To date, 2527 survivors and 868 siblings returned the questionnaire. We add new 5-year survivors at regular intervals, and continuously analyse and publish data and findings. We are now sending out the questionnaire to newly identified eligible survivors.

Study team: Kuehni CE, von der Weid NX, Michel G, Kuonen R, Kasteler R, Sommer G, Weiss A, Belle F. Institute of Social and Preventive Medicine, University of Bern

Funding: Swiss Cancer League (Grant No KLS-01605-10-2004, KLS-2215-02-2008 and KLS-3412-02-2014), Bernese Cancer League, Cancer League Zurich, Cancer League Aargau, Kinderkrebshilfe Schweiz, European Union (PanCareLIFE; FP7-HEALTH-2013-INNOVATION-1 HEALTH.2013.2.4.1-3, Grant No 602030).

Contact: Claudia Kuehni (claudia.kuehni@ispm.unibe.ch), Grit Sommer (grit.sommer@ispm.unibe.ch)

© ISPM - University of Bern 2016