title: Experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood lymphoma.
abstract: Given childhood cancer survivors' risk of treatment-induced late effects, long-term follow-up care is recommended. We explored experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood malignant lymphoma in Norway.
  
  
  
  We conducted five focus group interviews with 34 survivors (19 females; 21 Hodgkin/13 non-Hodgkin lymphoma survivors; mean age 39 years; mean time from diagnosis 26 years). Data was analyzed using principles of thematic analysis.
  
  
  
  Two main themes were identified: (1) the survivors' experiences with late effects-related care and (2) their preferences for long-term follow-up care. Most of the survivors were dissatisfied with their late effects-related care due to perceptions of poor coordination of healthcare needs in a fragmented system, combined with a perceived lack of knowledge of late effects among themselves and general practitioners (GPs). All survivors valued long-term follow-up care. Oncologists were the preferred care providers, but GPs were considered acceptable providers if they had sufficient knowledge of late effects and routine examinations, short waiting times, and improved GP-oncologist collaboration.
  
  
  
  Our results suggest that a shared care model of long-term follow-up care involving specialists, GPs, and the survivors themselves is likely to fulfill several of the currently unmet needs among adult survivors of childhood cancers. Improved patient education about late effects and follow-up care would aid self-management. The survivors' concerns regarding lack of sufficient knowledge of late effects among GPs suggest a need for improving access to, and dissemination of, information of late effects.
authors.affiliation: Department of Behavioural Sciences in Medicine, Institute for Basic Medical Sciences, Faculty of Medicine, University of Oslo, P.B. 1111 Blindern, 0317, Oslo, Norway. h.c.lie@medisin.uio.no.|Department of Paediatric Medicine, Faculty of Medicine, Oslo University Hospital, Rikshospitalet, Oslo, Norway. h.c.lie@medisin.uio.no.|National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, Oslo, Norway. h.c.lie@medisin.uio.no.
authors.forename: Hanne C
authors.initials: HC
authors.lastname: Lie
authors.affiliation: Department of Behavioural Sciences in Medicine, Institute for Basic Medical Sciences, Faculty of Medicine, University of Oslo, P.B. 1111 Blindern, 0317, Oslo, Norway.
authors.forename: Anneli V
authors.initials: AV
authors.lastname: Mellblom
authors.affiliation: Department of General Practice, Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway.
authors.forename: Mette
authors.initials: M
authors.lastname: Brekke
authors.affiliation: Department of Behavioural Sciences in Medicine, Institute for Basic Medical Sciences, Faculty of Medicine, University of Oslo, P.B. 1111 Blindern, 0317, Oslo, Norway.
authors.forename: Arnstein
authors.initials: A
authors.lastname: Finset
authors.affiliation: National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, 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, Oslo, Norway.
authors.forename: Cecilie E
authors.initials: CE
authors.lastname: Kiserud
authors.affiliation: Department of Paediatric Medicine, Faculty of Medicine, Oslo University Hospital, Rikshospitalet, Oslo, Norway.|Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.
authors.forename: Ellen
authors.initials: E
authors.lastname: Ruud
authors.affiliation: Department of Behavioural Sciences in Medicine, Institute for Basic Medical Sciences, Faculty of Medicine, University of Oslo, P.B. 1111 Blindern, 0317, Oslo, Norway.|Regional Advisory Unit in Palliative Care, Department of Oncology, Oslo University Hospital, Oslo, Norway.
authors.forename: Jon H
authors.initials: JH
authors.lastname: Loge
mesh_terms: D000293:Adolescent; D000328:Adult; D000359:Aftercare; D002648:Child; D002675:Child, Preschool; D005260:Female; D017144:Focus Groups; D006801:Humans; D008223:Lymphoma / Q000401:mortality / Q000523:psychology / Q000628:therapy*; D008297:Male; D017741:Survivors / Q000523:psychology*
keywords: Childhood cancer survivor; Late effects; Long-term follow-up care; Patient perspective; Survivorship