Hostname: page-component-cd9895bd7-hc48f Total loading time: 0 Render date: 2024-12-27T10:39:40.295Z Has data issue: false hasContentIssue false
  • English
  • Français

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
Get access Rights & Permissions [Opens in a new window]

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

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Faulkner, K. (2001). Children's understanding of death. In Hospice Care for Children, 2nd ed., Armstrong-Dailey, A. & Zarbock, S. (eds.), pp. 9–22. New York: Oxford University Press.
Goodwin, D.A.J., Boggs, S.R., & Graham-Pole, J. (1994). Development and validation of the pediatric oncology quality of life scale. Psychological Assessment, 6, 321–328.Google Scholar
Hinds, P.S., Birenbaum, L.K., Clarke-Steffen, L., et al. (1996). Coming to terms: Parents' response to a first cancer recurrence in their child. Nursing Research, 45, 148–153.Google Scholar
James, L. & Johnson, B. (1997). The needs of parents of pediatric oncology patients during the palliative care phase. Journal of Pediatric Oncology Nursing, 14, 83–95.Google Scholar
Kreicbergs, U., Valdimarsdottir, U., Onelov, E., et al. (2004). Talking about death with children who have severe malignant disease. The New England Journal of Medicine, 351, 1175–1186.Google Scholar
Landgraff, I., Abetz, L., & Ware, J. (1997). Child Health Questionnaire (chq): A Users Manual. Boston: The Health Institute Press.
Masera, G., Spinetta, J.J., Jankovic, M., et al. (1999). Guidelines for assistance to terminally ill children with cancer: A report of the siop working committee on psychosocial issues in pediatric oncology. Medical and Pediatric Oncology, 32, 44–48.Google Scholar
McCracken, G. (1988). The Long Interview. New York: Sage Publications.
Osaba, D. (1992). The quality of life committee of the clinical trials group of the national cancer institute of Canada: Organization and functions. Quality of Life Research, 1, 211–218.Google Scholar
Paasche-Orlow, M. (2004). The ethics of cultural competence. Academic Medicine, 79, 347–350.Google Scholar
Potts, R.G. (1996). Spirituality and the experience of cancer in an African-American community: Implications for psychosocial oncology. Journal of Psychosocial Oncology, 14, 1–19.Google Scholar
Ravens-Sieberer, U. & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German kindl: First psychometric and content analytical results. Quality of Life Research, 7, 399–407.Google Scholar
Reilly, T.P., Hasazi, J.E., & Bond, L.A. (1983). Children's conceptions of death and personal mortality. Journal of Pediatric Psychology, 8, 21–31.Google Scholar
Sourkes, B. (1995). Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness. Pittsburgh: University of Pittsburgh Press.
Varni, J.W., Katz, E.R., Seid, M., et al. (1998). The pediatric cancer quality of life inventory (pcql). I. Instrument development, descriptive statistics, and cross-informant variance. Journal of Behavioral Medicine, 21, 179–204.Google Scholar
Varni, J.W., Seid, M., Knight, T., et al. (2002). The pedsql 4.0 generic core scales: Sensitivity, responsiveness, and impact on clinical decision-making. Journal of Behavioral Medicine, 25, 175–193.Google Scholar
Varni, J.W., Seid, M., & Rode, C.A. (1999). The pedsql: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139.Google Scholar
World Health Organization. (1947). Constitution of the World Health Organization. Geneva: WHO.