Providing information about late effects after childhood cancer: Lymphoma survivors’ preferences for what, how and when.

Objective Childhood cancer survivors need information about risks of late effects to manage their health. We studied how and when adult, long-term survivors prefer to receive information about late effects. Methods Five focus-groups with adult survivors of childhood lymphomas who had completed routine follow-up care and participated in a preceding follow-up study ( n = 34, 19 females, mean age = 39). We used thematic analysis to identify themes regarding providing late effects information. Results The survivors wanted information about late effects (symptoms, prevention and treatment), lifestyle and social security rights. Information should be tailored, carefully timed, given “face-to-face” and in written format. Many expressed ambivalence regarding receiving information as adolescents, but it was seen as essential “to know” once a late effect occurred. A “re-information” consultation about late effects around age 25 was suggested as beneficial. Conclusion Although ambivalent, all survivors wanted information about late effects. They preferred individualized information, disclosed “step-by-step” and in a “re-information consultation” when reaching young adulthood. Practice Implications Providing information about late effects should be an on-going process across the cancer care trajectory. (Re-)Informing survivors when older would enhance their understanding of their health risks and could aid better health self-management beyond completion of follow-up care. [ABSTRACT FROM AUTHOR]