title: Information needs in parents of long-term childhood cancer survivors.
abstract: BACKGROUND
  Parents' knowledge about cancer, treatment, potential late effects and necessary follow-up is important to reassure themselves and motivate their child to participate in regular follow-up. We aimed to describe (i) parents' perception of information received during and after treatment; (ii) parents' current needs for information today, and to investigate; and (iii) associations between information needs and socio-demographic and clinical characteristics.
  
  
  METHODS
  As part of the Swiss Childhood Cancer Survivor Study, a follow-up questionnaire was sent to parents of survivors, diagnosed < 16 years and after 1990, and aged 11-17 years at study. We assessed parents' perception of information received and information needs, concerns about consequences of the cancer and socio-demographic information. Information on clinical data was available from the Swiss Childhood Cancer Registry.
  
  
  RESULTS
  Of 309 eligible parents, 189 responded (67%; mean time since diagnosis: 11.3 years, SD = 2.5). Parents perceived to have received verbal information (on illness: verbal 91%, written 40%; treatment: verbal 88%, written 46%; follow-up: verbal 85% written 27%; late effects: verbal 75%, written 19%). Many parents reported current information needs, especially on late effects (71%). The preferred source was written general (28%) or verbal information (25%), less favored was online information (12%). Information needs were associated with migration background (P = 0.039), greater concerns about consequences of cancer (P = 0.024) and no information received (P = 0.035).
  
  
  CONCLUSIONS
  Parents reported that they received mainly verbal information. However, they still needed further information especially about possible late effects. Individual long-term follow-up plans, including a treatment summary, should be provided to each survivor, preferably in written format.
authors: Department of Health Sciences & Health Policy, University of Lucerne, Switzerland.
authors: Janine
authors: J
authors: Vetsch
authors: Corina S
authors: CS
authors: Rueegg
authors: Micòl E
authors: ME
authors: Gianinazzi
authors: Eva
authors: E
authors: Bergsträsser
authors: Nicolas X
authors: NX
authors: von der Weid
authors: Gisela
authors: G
authors: Michel
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D003695:Delivery of Health Care; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007255:Information Services / Q000592:standards / Q000706:statistics & numerical data*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000517:prevention & control*; D010290:Parents / Q000193:education* / Q000523:psychology*; D011379:Prognosis; D011788:Quality of Life; D012042:Registries; D017741:Survivors / Q000523:psychology*
keywords: follow-up care; information needs; information received; parents of childhood cancer survivors; pediatric oncology; questionnaire survey