A review of long-term follow-up for survivors of childhood cancer

Abstract

Though cure from cancer is not guaranteed, children's chances of survival have increased significantly. As a result the paediatric oncology community is focused on providing appropriate follow-up care to an increasing number of young cancer survivors. How this care should be designed and delivered however remains the centre of ongoing discussion and was the focus of this review. The aims of the review were to (1) gain an understanding of current follow-up practices from studies involving health care professionals, (2) identify and evaluate studies presenting views of survivors, (3) examine commentaries on both the current and future design of long-term follow-up services and (4) evaluate existing follow-up guidelines. Empirical research, commentary papers and published guidelines were reviewed. Twenty-eight papers and five guidelines were analysed. Empirical papers were examined in relation to sample, design, findings and limitations. Commentary papers were assessed in relation to key issues about follow-up care. Guidelines were assessed on how far they were evidence-based, peer-reviewed and involved users in their development. Varying models of care were illustrated, and were dependent upon personnel and centre orientation. Variability in the level and degree to which long-term survivors were followed up was also reported. Inconsistencies in practice were noted. Nonetheless requirements for an effective service were highlighted in the majority of publications, these included communication and information. Although young people and professionals had a shared view on many aspects of follow-up care, these preferences were not consistently mirrored in service provision.