Information needs and decision‐making preferences of children with cancer

Surveys discussing information needs and decision‐making preferences were administered to 50 children with cancer (ages 8–17) and 60 accompanying parents. Children wanted information on all aspects of their disease and its treatment, particularly prognosis. 76% of children wanted to be told a percent chance for cure, no matter what it was. Only 38% of parents wanted their children to be given this information ( p < 0.01). 95% of patients wanted to be told if they were terminally ill. The majority felt that the treatment decision was the physician's. Although 96% of patients did not want to make their own decisions about curative therapy, 63% of adolescents (≥13) wanted to make their own decisions about palliative therapy vs. 28% of younger patients ( p = 0.018). Patients felt that people should be allowed to make decisions about participation in medical research at age 14, for treatment of minor medical problems at 16, and to refuse potentially curative therapy for cancer at 17. Parents often want to shield their children from adverse information, but most children want to be fully informed about their disease. Children usually do not want to make decisions about their initial therapy, but many feel that they should decide about palliation.