Follow-Up Care Study

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: 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 (Michel et al. Psycho-Oncology 2010) together with the psychological well-being in childhood cancer survivors (Michel et al. Journal of Clinical Oncology 2010) using data from the Swiss Childhood Cancer Survivor Study (SCCSS). In part 3, a questionnaire survey will assess opinions and perspectives on currently used and desired optimal follow-up care. The sample includes childhood, adolescent and young adult 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:

Essig S, von der Weid NX, Skinner R, Kuehni CE & Michel G.
Follow-up for paediatric survivovrs of cancer - a survey of paediatric oncology/haematology institutions across Europe.
PLoS One. 2012;7(12):e53201.

Kuehni CE, Strippoli MPF, Rueegg CS, Rebholz CE, Bergstraesser E, Grotzer M, von der Weid NX & Michel G.
Educational achievements in Swiss childhood cancer survivors compared to the general population.
Cancer 2012;118:1439-1449.

Michel G, Greenfield D, Absolom K & Eiser C.
Follow-up care after childhood and young adult cancer: Satisfaction and associations with coping style.
Psycho-Oncology 2011;20: 813-822

Michel G, Kuehni CE Rebholz CE, Zimmermann K, Eiser C, Rueegg CS & von der Weid NX.
Can health beliefs help explaining attendance to follow-up care? The Swiss Childhood Cancer Survivor Study.
Psycho-Oncology 2011. 20(10), 1034-1043.

Rebholz CE, von der Weid NX, Michel G. Niggli F, Kuehni CE.
Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study.
European Journal of Cancer 2011; 41:221-9

Michel G, Rebholz CE, von der Weid NX, Bergstraesser E, Kuehni CE.
Psychological distress in adult childhood cancer survivors: the Swiss Childhood Cancer Survivor Study.
Journal of Clinical Oncology 2010; 28:1740-7
 

Oral presentations:

Michel G
I am a survivor! Wie geht es Menschen, die als Kinder oder Jugendliche krebs überlebten?
14. Internationales Seminar Onkologische Pflege - Fortgeschrittene Praxis, St. Gallen Switherland (26 August 2011)

Michel G
Nachsorge nach einer Krebserkrankung im Kindesalter: Ein neues Feld für die Pflege [Follow-up after childhood cancer: A new field for nurses?].
13. Schweizer Onkologiepflegekongress, Bern, Switzerland (24 March 2011)

Michel, G.
Follow-up care after childhood cancer in Europe.
Annual Meeting of the Swiss Paediatric Oncology Group, Lugano, Switzerland (5 February 2011)

Poster presentations:

Michel G, Essig S, von der Weid NX, Skinner R & Kuehni CE (September 2011).
Follow-up care for paediatric survivors of childhood cancer: A survey of paediatric oncology/haematology institutions across Europe.
European Symposium on Late Complications after Childhood Cancer (ESLCCC), Amsterdam, NL.

Michel G., von der Weid NX., Byrne J, Debling D, Essig S, Skinner R, Hjorth L, KremerL, Frey E, Bardi E, Kuehni CE, for the PanCare network (October, 2009).
Follow-up care after childhood cancer in Europe: A pilot study.
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
- Lupatsch, Judith. Institute of Social and Preventive Medicine, University of Bern
- Heg, Zina. Institute of Social and Preventive Medicine, University of Bern

Applicant

- 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,  Ambizione Extension PZ00P3_141722 / 1

Project Duration

08.2009 - 07.2014

Status

ongoing

© ISPM - Universität Bern 2016