title: Health-related quality of life and enrollment in phase 1 trials in children with incurable cancer.
abstract: OBJECTIVE
  To investigate health-related quality of life (HRQOL) in children eligible for Phase 1 trials and the reasons why families consider participating in these trials.
  
  
  METHODS
  Individual, semistructured interviews were conducted with parents (seven mothers, two fathers) and three children, after a child was invited to participate in a clinical trial. Information regarding disease and treatment progression, daily life, and decision making about experimental treatments was elicited. Interviews were recorded, transcribed, and coded for themes.
  
  
  RESULTS
  HRQOL themes were grouped into four main domains: physical, psychological, social, and spiritual. Minimal physical restrictions, maintaining normalcy and control, information sharing, and having hope for life seemed to be critical HRQOL components. Hope for a cure and prolonging the child's life were the main reasons for enrolling in Phase 1 trials.
  
  
  CONCLUSIONS
  Normalcy and control are key end-of-life HRQOL components, and hope for life is a main reason for participating in Phase 1 trials.
authors.affiliation: Department of Psychology, Haematology/Oncology Program, Population Health Sciences, Research Institute, The Hospital for Sick Children, and University of Toronto, Toronto, Ontario, Canada. maru.barrera@sickkids.ca
authors.forename: Maru
authors.initials: M
authors.lastname: Barrera
authors.forename: Norma
authors.initials: N
authors.lastname: D'Agostino
authors.forename: Janet
authors.initials: J
authors.lastname: Gammon
authors.forename: Lynlee
authors.initials: L
authors.lastname: Spencer
authors.forename: Sylvain
authors.initials: S
authors.lastname: Baruchel
mesh_terms: D000293:Adolescent; D002170:Canada; D002648:Child; D017321:Clinical Trials, Phase I as Topic; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D010166:Palliative Care; D018579:Patient Selection; D011788:Quality of Life