PanCareSurFup

Background: Long-term survival after childhood cancer exceeds 80%, but two thirds of survivors develop chronic conditions. Late mortality is increased as a consequence of the cancer and its treatment. More than ten years after diagnosis, deaths from second primary cancers and circulatory causes predominate. There is a need to identify avoidable risk factors for these late effects. These risk factors are being investigated within the international study PanCareSurFup, where Switzerland is one of the 11 participating European countries.

Objectives: The study investigates incidence and risk factors for second primary cancers, cardiovascular diseases and late mortality. Furthermore, guidelines for the clinical follow-up of survivors will be developed.

Methods: The Swiss cohort of 5-year survivors of childhood cancer will contribute to the pan-European cohort. Within the cohort we identify cardiovascular diseases and second primary cancers via: a) questionnaires; b) mortality records; and, c) record linkage with cantonal cancer registries (for second primary cancers). Patient-reported diseases are validated with medical records. Survivors suffering from severe cardiovascular diseases or second primary sarcomas or carcinomas are included in a nested case-control study. For those patients, we are extracting details of radio- and chemotherapy from medical records. In close collaboration with experts from across Europe, we write systematic reviews to develop evidence-based, standardised guidelines for clinical follow-up of survivors.

Rationale and significance: This research project provides a unique opportunity to study the most severe and life threatening late effects of childhood cancer in an international setting that maximises statistical power and generalizability of results. The identification of avoidable causes for cardiovascular diseases and second primary cancers will allow treatments to be adapted for new patients. The goal is to maximize cure rates with minimal long-term side effects.

Current status of project: The Swiss cohort dataset includes 4719 5-year survivors. Data on vital status, causes of death, as well as data on second primary neoplasms and cardiovascular diseases are currently being analysed. The case-control studies are ongoing and we are currently collecting detailed treatment data from medical records for survivors included in these studies.

Study team: Kuehni CE, Kuonen R, Sommer G, Schindler M, Institute of Social and Preventive Medicine, University of Bern; Michel G, Department of Health Sciences and Health Policy, University of Lucerne

Funding: European Union FP7- HEALTH 2010.2.4.1-7 (Project No. 257505). Swiss Cancer League (Grant No KFS-02783-02-2011)

Contact: Claudia Kuehni (claudia.kuehni@ispm.unibe.ch), Rahel Kuonen (rahel.kuonen@ispm.unibe.ch)

© ISPM - University of Bern 2016