Follow-up care after childhood and young adult cancer

Summary

This is a survey of long-term survivors (≥5 years) of childhood cancer, oncologists/haematologists and family practitioners in Switzerland, to assess current use of follow-up care and preferences/opinions for a future Swiss model of follow-up care.

Study Description

Background: Treatment for cancer in children and young adults has greatly improved and most patients are being cured. However, more than 50% of survivors of childhood cancer suffer from late effects. To detect and treat late effects as early as possible it is important that survivors continue to visit follow-up care long after they have been cured from the cancer. 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 according to the current status of research, it is also important that it is convenient for survivors to participate.

Aims: 1) Compare advantages and disadvantages of follow-up care models currently used in Europe. 2) Determine the current availability and use of follow-up care in survivors of childhood and young adult cancer in Switzerland. 3) Determine the advantages and disadvantages of follow-up care models as perceived by survivors, oncologists and family practitioners, and compare their views and opinions.

Method: Project 1 will comprise a questionnaire survey of clinics and follow-up programs to assess the models of care currently used in Europe. In project 2, current use of follow-up care together with their psychological well-being will be determined in childhood cancer survivors using data from the Swiss Childhood Cancer Survivor Study. In project 3, a questionnaire survey will assess opinions and perspectives on currently used and desired optimal follow-up care. The sample will include cancer survivors who were diagnosed with cancer between 1990 and 2005 and aged under 25 years, who have survived for more than 5 years and who are currently aged 11 years and older. In addition paediatric and adult oncologists and haematologists, and family practitioners will fill in a questionnaire.

Rationale and Significance: This project will give an overview of follow-up care models used in Europe and describe the preferences for follow-up care models in survivors, oncologists and family practitioners in Switzerland. Differences between the three groups will be determined in order to improve follow-up care in the future, adapting it to the 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.

Publications

Peer-reviewed publications:

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., Greenfield, D., Absolom, K. & Eiser, C. (2010).
Follow-up care after childhood and young adult cancer: Satisfaction and associations with coping style.
Psycho-Oncology. DOI:10.1002/pon.1783

Poster presentations:

Michel, G., von der Weid, N.X., Byrne, J., Debling, D., Essig, S., Skinner, R., Hjorth, L., Kremer, L., Frey, E., Bardi, E., Kuehni, CE., for the PanCare network (October, 2009).
Follow-up care after childhood cancer in Europe: A pilot study.
Poster presented at the European Symposium on Late Complications after Childhood Cancer (ESLCCC), Edinburgh, UK.

Study Team

- Michel, Gisela (PI). Institute of Social and Preventive Medicine, University of Bern
- Hohn, Anna. Institute of Social and Preventive Medicine, University of Bern

Applicants

- Michel, Gisela (PI). Institute of Social and Preventive Medicine, University of Bern

Collaborations

- Kuehni, Claudia. Institute of Social and Preventive Medicine, University of Bern
- Von der Weid, Nicolas. Pediatric Oncology, CHUV Lausanne
- Niggli, Felix. Center of clinical research, University of Zurich
- Egger, Matthias. Institute of Social and Preventive Medicine, University of Bern

Partners

- Swiss Paediatric Oncology Group (SPOG)
- Swiss Childhood Cancer Registry (SCCR)
- Swiss Childhood Cancer Survivor Study (SCCSS)
- Late Effects Group Sheffield

Funding

Swiss National Science Foundation: Ambizione Fellowship PZ00P3_121682 / 1

Project Duration

08.2009 - 07.2012

Status

ongoing