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Summery

This is a follow-up survey of all long-term survivors (≥5 years) of childhood cancer in Switzerland, to assess somatic and psychosocial late effects and health-related quality of life.

Study description

Background: Thanks to therapeutic improvements in the past decades, survival rates in childhood cancer have increased to 75-80%, resulting in a growing population of long-term survivors. However, cancer and cancer treatments have been associated with adverse late effects. Therefore, health and quality of life of survivors are a matter of increasing concern. In Switzerland and elsewhere, comprehensive data on the burden of late effects of childhood cancer and its risk factors, and data on quality of follow-up care in long-term survivors are scarce.

Objectives: The proposed research project aims to investigate the long-term outcome of former childhood cancer patients who were diagnosed with cancer before age 16 and survived for more than 5 years. We want to study incidence of various somatic outcomes (late mortality, secondary malignancies, endocrine disorders, infertility, cardiovascular events) and health related quality of life (HRQoL), and their association with a number of risk factors assessed prospectively at the time of diagnosis (tumour, treatment modalities, demographic characteristics). In addition, current practice of health-care provision and health behaviour in long-term survivors will be investigated.

Methods: This is a prospective cohort study based on the population of children registered in the Swiss Childhood Cancer Registry (SCCR), which, since 1976, has collected systematically information on children participating in clinical trials, and since 1980 on all childhood cancer patients living in Switzerland. The SCCR contains 5866 records on childhood cancer patients (September 2008).  Eligible for the study are 2900 individuals, who have been diagnosed before May 1, 2003 (i.e. at least 5 years prior to beginning of the study) have survived for more than 5 years and are Swiss residents. The age range at the time of the study will be 5 to 49 years.

A detailed questionnaire will be sent to participants, assessing demographic and socio-economic information, educational and professional achievements, current medical conditions and treatments, HRQoL, health behaviour and healthcare provision. A sub-sample of participants from the major diagnostic groups reporting potentially relevant events will be interviewed in more detail by phone. If consent is given, questionnaire data will be complemented with and validated against GP and hospital records.

Rationale and significance: The existing database of the SCCR gives the rare opportunity for a nationwide study of long-term outcomes in survivors of childhood cancer. The project will increase the knowledge on incidence and risk factors of late effects and provide a summary of the current status of care in Switzerland. As many late effects can be prevented or cured if diagnosed early, this study will also contribute to improving the health of current and future survivors of childhood cancer.

Publications

Peer reviewed

Michel, G., Kuehni, C.E. Rebholz, C.E., Zimmermann, K., Eiser, C., Rueegg, C.S., & von der Weid, N.X. (2010).
Can health beliefs help explaining attendance to follow-up care? The Swiss Childhood Cancer Survivor Study.
Psycho-Oncology. DOI: 10.1002/pon.1823

Michel G, von der Weid N, Zwahlen M, Adam M, Rebholz CE, Kuehni CE.
The Swiss Childhood Cancer Registry: rationale, organisation and results for the years 2001-2005.
Swiss Med Wkly 2007;137:502-509 
 

Published abstracts

Rebholz CE, von der Weid NX,  Michel G, Niggli F, Kuehni, CE.
Follow-up care in long-term childhood cancer survivors in Switzerland: who is missed out? 
Swiss Med Wkly 2008; 138 (Suppl. 164):4S

Kuehni, CE, Rebholz CE, Michel G, Adam M, Niggli F, von der Weid NX.
Educational level and employment of Swiss childhood cancer survivors.
Swiss Med Wkly 2008; 138 (Suppl 164):26S

Rebholz CE, Von Der Weid NX, Michel G, Niggli F, Kuehni CE.
Smoking behaviour among Swiss childhood cancer survivors.
Swiss Med Wkly 2008; 138 (Suppl 164):26S

Rebholz C, Kuehni CE, Michel G, von der Weid NX.
The Swiss Childhood Cancer Survivor Study: Aims, methods and preliminary results.
Swiss Med Wkly 2007;137 (Suppl. 158):6S

Study Team

- Rebholz, Cornelia. Institute of Social and Preventive Medicine, University of Bern
- Rüegg, Corina. Institute of Social and Preventive Medicine, University of Bern
- Kuehni, Claudia (Co-PL). Institute of Social and Preventive Medicine, University of Bern
- Von der Weid, Nicolas (PL). Pediatric Oncology, CHUV Lausanne
- Niggli, Felix. Center of clinical research, University of Zurich
- Michel, Gisela. Institute of Social and Preventive Medicine, University of Bern

Applicants

- Von der Weid, Nicolas. Pediatric Oncology, CHUV Lausanne
- Kuehni, Claudia. Institute of Social and Preventive Medicine, University of Bern
- Egger, Matthias. Institute of Social and Preventive Medicine, University of Bern
- Zwahlen, Marcel. Institute of Social and Preventive Medicine, University of Bern
- Probst-Hensch, Nicole. Dept. of Pathologie / Dept. of Social and Preventive Medicine, University Hospital Zurich
- Niggli, Felix. Center of clinical research, University of Zurich 

Partners

- Swiss Paediatric Oncology Group (SPOG)
- Swiss Association of Cancer Registries (Prof. Dr. phil. Nicole Probst, ASRT)

Funding

Oncosuisse und Wyeth Foundation

Project duration

Oncosuisse KLS-01605-10-2004 01.2006 - 12.2008
Oncosuisse KLS-01605-10-2004 07.2008 – 07.2010

Wyeth Foundation 01.2006 – 07.2007

State

ongoing