FOLLOW UP OF CHILDHOOD CANCER SURVIVORS

Models of care for follow up of childhood cancer survivors: a systematic review

Background

There have been substantial increases in survival from childhood cancers over the last three decades.  After childhood cancer 60% of people who are more than five years from completion of therapy will experience at least one or more treatment- or disease-related late effects of therapy; over 30% of these problems are moderate or severe. Physical, mental or social aspects of health may be affected which may interfere with survivors’ autonomy.

As they grow older, survivors of childhood cancer need access to appropriate expertise within adult health care system. A wide range of models of care for survivors of cancer have been developed, and reviews have been undertaken focussed primarily upon the effectiveness of alternative approaches in the adult cancer population. The most effective mode of follow-up remains a matter of current debate. This review seeks to uncover the existing evidence which underpin modes of follow-up with the aim of influencing clinical practice and identifying key areas and approaches for future research.

Findings

The aim of this review was to identify studies that presented comparative data from retrospective or prospective groups.  Despite a rigorous search for studies of this design we were unable to identify any comparative studies that evaluated methods of providing follow-up care for survivors of childhood cancer. 

We also documented studies which failed to meet the study design inclusion criteria to give a broad picture of the evidence base at present.  Given the heterogeneity of the evaluation tools and follow-up programmes, it was difficult to draw any overall conclusions as to benefits or perceived patient needs. However it appeared that clinical care was valued highly by the majority of follow-up clinic attendees as might be expected for this self-selected sample. Supportive care was perceived as more important by patients who required more interventions and were experiencing more late-effects symptoms.  There was a contrast between findings that patients who were not followed-up may have been receiving inadequate care both in terms of their perceived satisfaction and detection of late-effects which require treatment, and the idea that there may be a sub-group of patients for whom long-term follow-up is not an essential part of care. These findings may represent different sub-groups of patients (potentially relating to risk stratification models), or they may be conflicting results from similar patient groups.

The review has identified areas for focussing future research efforts based on the observational studies retained and it is envisaged that the absence of research findings will provide impetus to the development of rigorous comparative evaluations that seek to address these comparisons in relevant settings and for relevant samples of patients.

Conducted by: Morag Heirs1, Bob Phillips1, Russell Slack1, Sara Suekarran1, Kate Light1

1. Centre for Reviews and Dissemination

Publications

Centre for Reviews and Dissemination. Models of care for follow-up of childhood cancer survivors: a systematic review. Evidence Briefing. March 2010

Heirs M, Suekarran S, Slack R, Light K, Gibson F, Glaser A, Hawkins M, Phillips B. A systematic review of models of care for the follow up of childhood cancer survivors. Pediatr Blood Cancer 2013;60(3):351-6

Funding

Commissioned by Macmillan Cancer Support and the Department of Health