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

Patient Educ Couns. 2015 May;98(5):604-11. doi: 10.1016/j.pec.2015.01.016. Epub 2015 Jan 31.

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Antineoplastic Agents / adverse effects
  • Antineoplastic Agents / therapeutic use
  • Communication
  • Drug-Related Side Effects and Adverse Reactions / psychology
  • Female
  • Focus Groups
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Interviews as Topic
  • Long Term Adverse Effects / etiology*
  • Long Term Adverse Effects / psychology
  • Lymphoma / rehabilitation*
  • Lymphoma / therapy
  • Male
  • Needs Assessment
  • Patient Education as Topic* / methods
  • Patient Preference*
  • Physician-Patient Relations
  • Survivors / psychology*
  • Young Adult

Substances

  • Antineoplastic Agents