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

Published online by Cambridge University Press:  03 March 2006

MARU BARRERA ,
NORMA D'AGOSTINO ,
JANET GAMMON ,
LYNLEE SPENCER  and
SYLVAIN BARUCHEL
MARU BARRERA
Affiliation:
Department of Psychology, Haematology/Oncology Program, Population Health Sciences, Research Institute, The Hospital for Sick Children, and University of Toronto, Toronto, Ontario, Canada
NORMA D'AGOSTINO
Affiliation:
Department of Psychosocial Oncology, Palliative Care, After Care and Survivorship Program, Princess Margaret Hospital, Toronto, Canada
JANET GAMMON
Affiliation:
Haemotology/Oncology Division, The Hospital for Sick Children, Toronto, Ontario, Canada
LYNLEE SPENCER
Affiliation:
Department of Psychology, Haematology/Oncology Program, The Hospital for Sick Children, Toronto, Ontario, Canada
SYLVAIN BARUCHEL
Affiliation:
Haemotology/Oncology Division, The Hospital for Sick Children, Toronto, Ontario, Canada
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Abstract

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.

Keywords

Quality of lifeChildhood cancerEnd of lifePalliative care
Type
Research Article
Information
Palliative & Supportive Care , Volume 3 , Issue 3 , September 2005 , pp. 191 - 196
Copyright
© 2005 Cambridge University Press

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