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 - University of Bern 2019