Transition from paediatric to adult care

Background: Transition from paediatric to adult care is a crucial step in many chronic diseases of childhood. Treatments in paediatric oncology have improved over the past decades; now about 80% of patients survive to adulthood. However, 60% suffer from adverse somatic or psychosocial late effects from the cancer and its treatments and necessitate long-term follow-up. Generally, follow-up is well organised during the first 5-10 years after diagnosis, and often occurs in the context of a clinical trial. However, transfer of patients to adult care often fails, and survivors may be lost to follow-up or continue to visit their paediatric institution despite their adult status and changing needs.

Objectives: The project aims to: 1) determine the frequency of follow-up in childhood cancer survivors when they are in paediatric care; 2) describe transfer modalities; 3) describe the health care providers involved in follow-up and transfer; 4) determine factors associated with successful transfer; and 5) describe the advantages and disadvantages of different kinds of follow-up for survivors, families and health care providers from paediatric and adult wards.

Method: This study analyses information collected from medical records on follow-up care, transitional care and transfer to adult care. Additional information on current follow-up, socio-economic characteristics and late effects comes from two separate, on-going questionnaire studies (Swiss Childhood Cancer Survivor Study and Childhood Cancer Survivor Follow-up Study).

Rationale and Significance: The available information will be used to develop the first national guidelines for the transition of childhood cancer survivors. In addition, results will provide a basis for the improvement of transitional care for other chronic diseases.

Current status of project: All data have been collected and are now being analysed.

Study team: Michel G, Gianinazzi ME, Department of Health Sciences and Health Policy, University of Lucerne

Funding: Swiss Cancer League (Grant No KFS-02631-08-2010)

Contact: Gisela Michel (gisela.michel@unilu.ch)

© ISPM - University of Bern 2016