Transition

Summary

This is a project using medical records, questionnaire surveys and focus groups to assess past follow-up care and organisation of transition to adult care for childhood cancer survivors.

Study Description

Background: Transition from paediatric to adult care is a crucial step in many chronic diseases of childhood, where patients reach adult age. In paediatric oncology there has been a huge improvement in treatment during the past decades, such that now about 80% of patients survive and reach adult age. However, around 60% of survivors suffer from adverse somatic or psychosocial late effects from their treatment and the original disease, and long-term follow-up is necessary for most of them. Generally, follow-up is well organised for survivors during the first 5-10 years, as long as they are in paediatric care and often within the context of clinical trial follow-up. However, successful transition to adult care often fails and survivors are either lost or might continue follow-up in paediatric care despite their adult age and changing needs.

Aims: The proposed project aims to determine: 1) the frequency of follow-up in childhood cancer survivors when they are in paediatric care, transition and adult care, 2) the health care providers who are involved in follow-up, 3) the information provided to survivors and potential new health care providers, 4) factors associated with different kinds of follow-up and with a successful or problematic transition to adult care, 5) late outcomes (survival, late effects) associated with different forms of paediatric care and transition, and 6) advantages and disadvantages of different kinds of follow-up perceived by survivors, their families and health care providers from paediatric and adult wards.

Method: We will employ quantitative and qualitative approaches. We will analyse information on follow-up care, transitional care and transfer to adult care using medical records. In addition, we will collect in-depth information performing focus group meetings. Additional information on current follow-up, socio-economic characteristics and late effects will be available from two separate, ongoing questionnaire studies (SCCSS and CCFU). Information on diagnosis and treatment is available from the Swiss Childhood Cancer Registry.

Rationale and Significance: Transition to adult care is an important step where many of those who need care might be lost. Using a mixed methods approach of routine data, information from medical records, questionnaire surveys and focus groups this study will provide an overview of how follow-up care in Switzerland is implemented for young survivors while in paediatric care, how transition is organised and if transition to adult care has been successful. The available information can be used to develop guidelines for the transition process of childhood cancer survivors in Switzerland. In addition, results will provide a basis to improve transitional care in other chronic paediatric diseases.

Publications

Study Team

- Michel, Gisela. Institute of Social and Preventive Medicine, University of Bern
- Essig, Stefan. Institute of Social and Preventive Medicine, University of Bern
- Gianinazzi, Micol. Institute of Social and Preventive Medicine, University of Bern

Applicants

- Michel, Gisela (PI). Institute of Social and Preventive Medicine, University of Bern (Project Grant Cancer Research Switzerland)
- Essig, Stefan (PI). Institute of Social and Preventive Medicine, University of Bern (MD-PhD Fellowship, Swiss National Science Foundation)

Collaborations

- Kuehni, Claudia. Institute of Social and Preventive Medicine, University of Bern
- Von der Weid, Nicolas. Pediatric Oncology, CHUV Lausanne
- Bergsträsser, Eva. University Children’s Hospital, Zurich
- Ketterer, Nicolas. Centre Pluridisciplinaire d’Oncologie, CHUV Lausanne

External Collaborations

- Surìs, Joan-Carles. Institute of Social and Preventive Medicine, CHUV Lausanne
- Eiser, Christine. Department of Psychology, University of Sheffield, Sheffield, UK
- Paulussen, Michael. Kinder- und Jugendklinik Datteln, University of Witten/Herdecke, Datteln, D

Partners

- Swiss Paediatric Oncology Group (SPOG)
- Swiss Childhood Cancer Registry (SCCR)
- Swiss Childhood Cancer Survivor Study (SCCSS)
- Study on Follow-up Care after Childhood and Young Adult Cancer (CCFU)

Funding

- Cancer Research Switzerland: KLS - 02631-08-2010
- MD-PhD Fellowship Cancer Research Switzerland: KFS - 02606-06-2010 / Swiss National Science Foundation: SNF - 323630-133897

Project Duration

04.2011 – 03.2014

Status

ongoing