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

Palliat Support Care. 2005 Sep;3(3):191-6. doi: 10.1017/s1478951505050315.


Objectives: 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.

MeSH terms

  • Adolescent
  • Canada
  • Child
  • Clinical Trials, Phase I as Topic*
  • Decision Making
  • Female
  • Humans
  • Male
  • Neoplasms / psychology
  • Neoplasms / therapy*
  • Palliative Care*
  • Patient Selection*
  • Quality of Life*