• Palliat Support Care · Sep 2005

    Health-related quality of life and enrollment in phase 1 trials in children with incurable cancer.

    • Maru Barrera, Norma D'Agostino, Janet Gammon, Lynlee Spencer, and Sylvain Baruchel.
    • 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
    • Palliat Support Care. 2005 Sep 1;3(3):191-6.

    ObjectivesTo investigate health-related quality of life (HRQOL) in children eligible for Phase 1 trials and the reasons why families consider participating in these trials.MethodsIndividual, 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.ResultsHRQOL 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.ConclusionsNormalcy and control are key end-of-life HRQOL components, and hope for life is a main reason for participating in Phase 1 trials.

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