title: 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.
  
  
  CONCLUSIONS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Behavioural Sciences in Medicine, University of Oslo, Oslo, Norway; National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, Radiumhospitalet, Oslo, Norway. Electronic address: h.c.lie@medisin.uio.no.
authors.forename: Hanne C
authors.initials: HC
authors.lastname: Lie
authors.affiliation: Department of Behavioural Sciences in Medicine, University of Oslo, Oslo, Norway; National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, Radiumhospitalet, Oslo, Norway.
authors.forename: Jon H
authors.initials: JH
authors.lastname: Loge
authors.affiliation: National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, Radiumhospitalet, Oslo, Norway.
authors.forename: Sophie D
authors.initials: SD
authors.lastname: Fosså
authors.affiliation: National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, Radiumhospitalet, Oslo, Norway.
authors.forename: Hanne M
authors.initials: HM
authors.lastname: Hamre
authors.affiliation: National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, Radiumhospitalet, Oslo, Norway.
authors.forename: Siri L
authors.initials: SL
authors.lastname: Hess
authors.affiliation: Department of Behavioural Sciences in Medicine, University of Oslo, Oslo, Norway.
authors.forename: Anneli V
authors.initials: AV
authors.lastname: Mellblom
authors.affiliation: Department of Paediatric Medicine, Oslo University Hospital, Rikshospitalet, Oslo, Norway.
authors.forename: Ellen
authors.initials: E
authors.lastname: Ruud
authors.affiliation: Department of Behavioural Sciences in Medicine, University of Oslo, Oslo, Norway.
authors.forename: Arnstein
authors.initials: A
authors.lastname: Finset
mesh_terms: D000293:Adolescent; D000328:Adult; D000970:Antineoplastic Agents / Q000009:adverse effects / Q000627:therapeutic use; D003142:Communication; D064420:Drug-Related Side Effects and Adverse Reactions / Q000523:psychology; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D000069451:Long Term Adverse Effects / Q000209:etiology* / Q000523:psychology; D008223:Lymphoma / Q000534:rehabilitation* / Q000628:therapy; D008297:Male; D020380:Needs Assessment; D010353:Patient Education as Topic / Q000379:methods; D057240:Patient Preference; D010817:Physician-Patient Relations; D017741:Survivors / Q000523:psychology*; D055815:Young Adult
chemical_list: D000970:Antineoplastic Agents
keywords: Childhood cancer survivors; Late effects; Patient education; Patient-perspective; Providing information