title: Self and proxy-reported health status and health-related quality of life in survivors of childhood cancer in Uruguay.
abstract: BACKGROUND
  The incidence of cancer in children in Uruguay is similar to that in industrialized societies but the survival rate is half as great. This study assesses another important measure of treatment effectiveness: the health-related quality of life (HRQL) of survivors.
  
  
  METHODS
  All new patients diagnosed in a 3-year period were eligible if free of disease for at least 2 years after therapy and at least 7 years of age at the time of study. A sample of convenient subjects for comparison was obtained from schools and clinics for well children. During a 7-month period, Spanish language interviewer-administered questionnaires were used to collect Health Utilities Index data from survivors and the comparison group (self-reports), and from proxies (parents, physicians, and teachers).
  
  
  RESULTS
  Of 113 eligible survivors, 95 (84%) participated together with 96 "control" subjects. Control subjects have a higher mean HRQL utility score than survivors (P < 0.001). The mean score for survivors of acute lymphoblastic leukemia (ALL): 0.72 (n = 49) is higher than the score for survivors of brain tumors: 0.60 (n = 20), as expected. Inter-rater agreement is highest between survivors and parents, and lowest between controls and physicians or teachers.
  
  
  CONCLUSIONS
  The burden of morbidity in survivors of childhood cancer in Uruguay is considerable and greater than that in a comparative group of healthy children. Survivors of ALL have better HRQL than survivors of brain tumors, mirroring experience elsewhere. The level of inter-rater agreement is related to the degree of familiarity of the pair-members of respondents with each other.
authors.affiliation: Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
authors.forename: Mark
authors.initials: M
authors.lastname: Fluchel
authors.forename: John R
authors.initials: JR
authors.lastname: Horsman
authors.forename: William
authors.initials: W
authors.lastname: Furlong
authors.forename: Luis
authors.initials: L
authors.lastname: Castillo
authors.forename: Yasmine
authors.initials: Y
authors.lastname: Alfonz
authors.forename: Ronald D
authors.initials: RD
authors.lastname: Barr
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D006304:Health Status; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D015588:Observer Variation; D010290:Parents; D010820:Physicians; D019727:Proxy; D011788:Quality of Life / Q000523:psychology*; D012042:Registries; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D014583:Uruguay