Childhood and Adolescent Cancer Survivors’ Knowledge of their Disease and Effects of Treatment

Abstract

Most children diagnosed with cancer will become survivors of their disease. However, a large number of these children may be at risk for the development of late complications. It is not clear whether these survivors and their families are aware of their treatment history including diagnosis, treatment, and the late complications of their treatment. The purpose of this needs assessment was to ascertain survivors’ knowledge of their disease, the various treatment modalities, and whether they were aware of their individual risks for developing late complications of their treatment. A brief six-item questionnaire was developed to determine survivors’ knowledge of their cancer treatment and to be completed just before at their survivor visit. A total of 141 survivors completed this questionnaire. The mean age at diagnosis was 6.8 years, and the median age at the time of this assessment was 16 years. Although all of the subjects stated they knew their disease, only 84% (n = 118) listed their diagnosis. The majority of the survivors knew they received chemotherapy, but only 50% were able to list one or more specific drugs they received. Further lack of knowledge was also evident for survivors who received radiotherapy. The results of this assessment represent a lack of knowledge especially of the survivors’ individual risk for developing late complications of their therapy. Education about late complications of therapy should be introduced early and often such as at diagnosis, within months of the completion of therapy, and during every survivor clinic visit. A complete treatment summary should be provided to all survivors. This summary should include the survivors’individual risks for developing late complications and how their own health behaviors may influence the development of these late complications.