Long‐term follow‐up of survivors of childhood cancer in the UK

Abstract

Background Childhood cancer is rare, but there are now good survival prospects and in the UK approximately 1 in 1,000 young adults is a survivor of childhood cancer. There are many adverse health outcomes associated with the treatment of childhood cancer often arising several years after completion of treatment. The aim of this study was to quantify the long‐term clinical follow‐up practices concerning survivors of childhood cancer. Procedure A cross‐sectional postal survey of 22 treatment centres of the United Kingdom Children's Cancer Study Group (UKCCSG) clinicians was carried out as well as a cross‐sectional postal survey of general practitioners of most adult survivors of childhood cancer in Britain. Results Subsequent to 5 years after the end of treatment: 52% of UKCCSG clinicians follow‐up all survivors for life, while 45% discharge some patients. Of those clinicians discharging: over 50% discharged benign, stage I or tumors treated with surgery alone, in contrast 16% reported discharging all or most patients; almost all (97%) clinicians discharged to a general practitioner. Only 14% of clinicians reported nurses undertook a specialist role. Sixty‐five percent of the 10,979 general practitioners reported that their patient was not on regular hospital follow‐up. Conclusions There are wide variations in the extent to which survivors of childhood cancer are discharged from hospital follow‐up. There is a need for regularly updated national guidelines concerning the levels of follow‐up required for specific groups of survivors defined principally by the treatment they received. Pediatr Blood Cancer 2004;42:161–168.