As noted earlier, the debt owed to childhood cancer survivors is great. These individuals may have already experienced significant adverse health effects as a consequence of their cancer therapy, and are almost certain to face others in the future. It is imperative that information that may improve their understanding of their disease and its consequences be shared with them.
The CCSS education committee was established to coordinate educational activities within the cohort. Investigators are using several methods for educating and informing study participants, including this website, a semi-annual newsletter and informational brochures targeted to sub-groups at risk for particular late effects. Participants and investigators also communicate via email and the study's toll-free telephone number.
Another important tool for educating the survivor cohort is the intervention study. Intervention studies are designed to improve understanding of the health-related behaviors of the survivor cohort, and ultimately, to help participants modify behaviors that may increase their risk of experiencing adverse effects. Moreover, because the study of cancer survivors will affect both current and future patients, in addition to the survivors themselves, such intervention strategies can have a very wide impact. An example is the smoking cessation study being conducted in the CCSS cohort by investigators using a peer counseling approach, which if successful, may have broad application to the groups outlined above, as well as to the general population.
