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

- Childhood cancer survivors need information about treatment-related late effects LE.
- Adult survivors' preferences for LE information was explored in focus-groups.
- LE information should be individualized and well timed to reduce survivor anxiety.
- The survivors preferred receiving extensive LE information when older (e.g. age 25).
- Many showed ambivalence towards receiving LE information when feeling healthy.
- Suggestions for what, how and when LE information should be provided is presented.

ObjectiveChildhood 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.MethodsFive 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.ResultsThe 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.ConclusionAlthough 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 ImplicationsProviding 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.