Providing information about late effects after childhood cancer: lymphoma survivors' preferences for what, how and when

Abstract

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.

Keywords: Childhood cancer survivors; Late effects; Patient education; Patient-perspective; Providing information.