title: Evaluation of health status and health-related quality of life in a cohort of Italian children following treatment for a primary brain tumor.
abstract: BACKGROUND
  This study is a pilot experience aiming to investigate the compliance of an institutional cohort of Italian children treated for a malignant disease and their families in completing the health utilities index2, (HUI2) and the effectiveness of this measured in terms of their health status (HS) and health-related quality of life (HRQL). It specifically, it aimed to compare the HS and the HRQL, as expressed by the HUI2 global utility score, in cohorts of patients who had brain tumors, extra-cerebral solid tumors, or leukemia/lymphoma.
  
  
  METHODS
  Fifty survivors of brain tumors, between 8 and 30 years at the time of the assessment ("self") and/or their parents ("proxy"), attending the Pediatric Oncology Out Patient clinic of Padua, Italy, completed the HUI2 questionnaire. Eighty-nine children with acute leukemia/lymphoma and 74 with extra-cerebral solid tumors and/or their parents were also assessed.
  
  
  RESULTS
  The mean "self" and "proxy" HUI2 global utility scores in the brain tumor patients were 0.87 and 0.84, respectively, while in the cohorts of children with other solid tumors and leukemia/lymphoma, there were 0.94, 0.91, 0.96, and 0.92, respectively. The differences between the HUI2 global utility scores in the "self" and "proxy" assessment within each cohort of children were not statistically significant. In decreasing order of frequency, the attributes affected most commonly were: "emotion," "pain," "sensation," and "cognition" both by "self" and "proxy" assessment.
  
  
  CONCLUSIONS
  In this Italian population of childhood cancer survivors the HUI2 questionnaire proved to be a user-friendly tool, which provided information regarding HS and HRQL. A larger cohort of cancer children is needed to confirm the efficacy of the HUI2 questionnaire in distinguishing groups of children on this basis by disease category.
authors.affiliation: Department of Pediatrics, Division of Hematology-Oncology, Pediatric Neuro-Oncology Program, University of Padua, Padua, Italy.
authors.forename: Chiara
authors.initials: C
authors.lastname: Cardarelli
authors.forename: Cinzia
authors.initials: C
authors.lastname: Cereda
authors.forename: Lucia
authors.initials: L
authors.lastname: Masiero
authors.forename: Elisabetta
authors.initials: E
authors.lastname: Viscardi
authors.forename: Roberto
authors.initials: R
authors.lastname: Faggin
authors.forename: Annamaria
authors.initials: A
authors.lastname: Laverda
authors.forename: Gianni
authors.initials: G
authors.lastname: Bisogno
authors.forename: Giorgio
authors.initials: G
authors.lastname: Perilongo
mesh_terms: D000293:Adolescent; D000328:Adult; D001932:Brain Neoplasms / Q000523:psychology / Q000628:therapy*; D002648:Child; D005260:Female; D006304:Health Status; D006801:Humans; D007558:Italy; D008297:Male; D011788:Quality of Life; D011795:Surveys and Questionnaires; D017741:Survivors