title: Information provision and information needs in adult survivors of childhood cancer.
abstract: BACKGROUND
  Knowledge about their past medical history is central for childhood cancer survivors to ensure informed decisions in their health management. Knowledge about information provision and information needs in this population is still scarce. We thus aimed to assess: (1) the information survivors reported to have received on disease, treatment, follow-up, and late effects; (2) their information needs in these four domains and the format in which they would like it provided; (3) the association with psychological distress and quality of life (QoL).
  
  
  METHODS
  As part of the Follow-up survey of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to all survivors (≥18 years) who previously participated to the baseline survey, were diagnosed with cancer after 1990 at an age of <16 years.
  
  
  RESULTS
  Most survivors had received oral information only (on illness: oral: 82%, written: 38%, treatment: oral: 79%, written: 36%; follow-up: oral: 77%, written: 23%; late effects: oral: 68%, written: 14%). Most survivors who had not previously received any information rated it as important, especially information on late effects (71%). A large proportion of survivors reported current information needs and would like to receive personalized information especially on late effects (44%). Survivors with higher information needs reported higher psychological distress and lower QoL.
  
  
  CONCLUSIONS
  Survivors want to be more informed especially on possible late effects, and want to receive personalized information. Improving information provision, both qualitatively and quantitatively, will allow survivors to have better control of their health and to become better decision makers.
authors.affiliation: Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
authors.forename: Micòl E
authors.initials: ME
authors.lastname: Gianinazzi
authors.forename: Stefan
authors.initials: S
authors.lastname: Essig
authors.forename: Corina S
authors.initials: CS
authors.lastname: Rueegg
authors.forename: Nicolas X
authors.initials: NX
authors.lastname: von der Weid
authors.forename: Pierluigi
authors.initials: P
authors.lastname: Brazzola
authors.forename: Claudia E
authors.initials: CE
authors.lastname: Kuehni
authors.forename: Gisela
authors.initials: G
authors.lastname: Michel
mesh_terms: D000293:Adolescent; D000328:Adult; D016022:Case-Control Studies; D002648:Child; D054626:Consumer Health Information; D003625:Data Collection; D003695:Delivery of Health Care; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data*; D008297:Male; D008490:Medical Informatics; D020380:Needs Assessment; D009364:Neoplasm Recurrence, Local / Q000523:psychology / Q000628:therapy; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010353:Patient Education as Topic; D011379:Prognosis; D011788:Quality of Life; D012042:Registries; D011795:Surveys and Questionnaires; D015996:Survival Rate; D017741:Survivors / Q000523:psychology*; D055815:Young Adult
keywords: childhood cancer survivors; cohort study; information needs; information provision; questionnaire survey
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