title: Patient knowledge of late  effects of acute lymphoblastic leukaemia.
abstract: BACKGROUND
  Over 80% of children with acute lymphatic leukaemia (ALL) survive, but many develop long-term effects after the therapy. The aim of the study was to reveal how much Norwegian adults treated for acute lymphatic leukaemia before the age of 16 know about the risk of long-term effects.
  
  
  METHODS
  The participants (n = 139) were recruited from a cross-sectional study (ALLBARN) of adults treated for acute lymphatic leukaemia before the age of 16 in the period 1970-2002. Their knowledge of diagnosis, treatment and long-term effects was investigated in a semi-structured interview.
  
  
  RESULTS
  A median number of 23 years after treatment for acute lymphatic leukaemia, 85 (61%) of the participants were unable to give examples of possible long-term effects of cancer treatment. Reduced fertility was known to 35 participants (25%), while few were aware of the risk of heart failure (n = 3) or secondary malignancy (n = 5). Those who were aware of long-term effects usually had personal experience of the problem. However, the participants had a sound knowledge of their own diagnosis and the therapy they had been submitted to.
  
  
  CONCLUSIONS
  Long-term survivors of acute lymphatic leukaemia in childhood and adolescence know little of the risk of long-term effects. The dissemination of information about the potential consequences of the therapy should be improved.
authors.affiliation: Department of Paediatric Medicine, Women and Children's Division, Oslo University Hospital, Rikshospitalet, Norway. ellen.ruud@rikshospitalet.no
authors.forename: Ellen
authors.initials: E
authors.lastname: Ruud
authors.forename: Adriani
authors.initials: A
authors.lastname: Kanellopoulos
authors.forename: Bernward
authors.initials: B
authors.lastname: Zeller
authors.forename: Eva
authors.initials: E
authors.lastname: Widing
authors.forename: Geir Erland
authors.initials: GE
authors.lastname: Tjønnfjord
authors.forename: Sophie Dorothea
authors.initials: SD
authors.lastname: Fosså
mesh_terms: D000293:Adolescent; D000328:Adult; D000970:Antineoplastic Agents / Q000009:adverse effects; D002318:Cardiovascular Diseases / Q000209:etiology; D002648:Child; D003072:Cognition Disorders / Q000209:etiology*; D003430:Cross-Sectional Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007246:Infertility / Q000209:etiology*; D008297:Male; D016609:Neoplasms, Second Primary / Q000209:etiology; D010353:Patient Education as Topic / Q000592:standards; D054198:Precursor Cell Lymphoblastic Leukemia-Lymphoma / Q000150:complications / Q000628:therapy*; D011878:Radiotherapy / Q000009:adverse effects; D012307:Risk Factors; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology / Q000706:statistics & numerical data; D013997:Time Factors
chemical_list: D000970:Antineoplastic Agents