Die CCFU Studie (Follow-up care after childhood and young adult cancer) wurde durch den SNF finanziert. Es wurde untersucht wie die Nachsorge für ehemals krebskranke Kinder in Europa und in der Schweiz organisiert istDie Wünsche und Bedürfnisse für die zukünftige Organisation der Nachsorge bei ehemaligen Patienten, Onkologen/Hämatologen und Hausärzten wurde erhoben. Die Datenerhebungen sind abgeschlossen und folgende wissenschaftliche Fachartikel sind bereits publiziert oder im Druck und weitere sind in Arbeit.

Background: Treatment for cancer in children and young adults has greatly improved and most patients are being cured today. However, more than 50% of survivors of childhood cancer suffer from late effects. To detect and treat late effects as early as possible, many survivors should continue to attend follow-up care long after their cancer has been cured. Various models of follow-up care have been described, but so far none has been implemented in Switzerland. While follow-up care needs to be constantly updated to meet the current status of research, survivor participation is only ensured if follow-up is convenient.

Objectives: 1) To compare the advantages and disadvantages of follow-up care models currently used in Europe; 2) To determine the current availability and use of follow-up care in survivors of childhood and young adult cancers in Switzerland; and, 3) To determine the advantages and disadvantages of follow-up care models as perceived by survivors, oncologists and family practitioners, and to compare their views and opinions.

Methods: For part 1), we invited 198 clinics and follow-up programmes in Europe to complete a questionnaire survey describing the follow-up care available at their institution. For part 2), we analysed the current use of follow-up care together with the psychological well-being in childhood cancer survivors, using data from the Swiss Childhood Cancer Survivor Study (SCCSS). In part 3), a questionnaire survey assessed opinions and perspectives on both currently used and desired optimal follow-up care. The sample included childhood, adolescent and young adult cancer survivors diagnosed with cancer between 1990 and 2005 and aged <25 years, who survived for >5 years and who were aged 18+ years at the time of the study. In addition, parents of survivors aged 11-18 years, paediatric and adult oncologists and haematologists and family practitioners have completed a questionnaire.

Rationale and significance: This project provides an overview of follow-up care in Europe and will describe survivor, oncologist and family practitioner preferences for follow-up care models in Switzerland. We will determine the differences between the three groups in order to improve follow-up care and adapt it to differing preferences. The project will provide the basis for the development of a standardised model of follow-up care for childhood cancer survivors in Switzerland.

Current status of the project: All questionnaire surveys have been completed, and several papers have been published.

Study team: Michel G, Rueegg CS, Department of Health Sciences and Health Policy, University of Lucerne; Kuehni CE, Institute of Social and Preventive Medicine, University of Bern

Funding: Swiss National Science Foundation Ambizione Grant to Michel G (PZ00P3_121682 and PZ00P3_141722)

Contact: Gisela Michel (

© ISPM - Universität Bern 2019