Information needs of adolescents with cancer

Adolescents with cancer (AWC) have poorer treatment outcomes as well as higher incidence and mortality rates than do younger children, and they face additional challenges related to normal developmental issues of adolescence. Although research has shown that information on the cancer experience improves outcomes by decreasing uncertainty and increasing perceived support, little is known about the types of information AWC need and want. This study describes how AWC rate the importance of specific cancer-related information, analyzes gender and age group differences, and compares 2 different time-since-diagnosis groups of AWC. The sample consisted of adolescents with newly diagnosed cancer (n = 74) and those 1 to 3 years from diagnosis (n = 39). The Information Preferences of Adolescents (IPA) Scale was used to measure the adolescents' information needs. Both samples of AWC rated the need for information as high. There were no significant differences by age, but females had significantly higher total scores for both groups and for many item means in the newly diagnosed group. Qualitative analysis of the additional write-in items generated 4 themes: treatment/side effects, uncertainty, social issues, and personal/emotional issues.