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Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals - 07/12/11

Doi : 10.1503/cmaj.110392 
Deborah Tomlinson, MN RN a, Ute Bartels, MD b, Janet Gammon, RN b, Pamela S. Hinds, PhD RN d, e, Jocelyne Volpe, MN RN b, Eric Bouffet, MD b, Dean A. Regier, PhD f, Sylvain Baruchel, MD b, Mark Greenberg, MD a, b, Maru Barrera, PhD b, c, Hilary Llewellyn-Thomas, PhD g, Lillian Sung, PhD MD a, b,
a Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ont. 
b Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, Ont. 
c Department of Psychology, The Hospital for Sick Children, Toronto, Ont. 
d Department of Nursing Research and Quality Outcomes, The George Washington University, Washington, DC 
e Children’s National Medical Center, and Department of Pediatrics, The George Washington University, Washington, DC 
f Fred Hutchinson Cancer Research Center, University of Washington, Seattle, Wash. 
g Department of Community and Family Medicine, Dartmouth Medical School, Dartmouth College, Hanover, NH 

* Correspondence to: Dr. Lillian Sung

Contributors: Deborah Tomlinson contributed substantially to the conception and design of the study and the acquisition and interpretation of the data, drafted the article and revised it critically for important intellectual content, and gave final approval of the version to be published. Ute Bartels, Janet Gammon, Pamela S. Hinds, Jocelyne Volpe, Eric Bouffet, Dean A. Regier, Sylvain Baruchel, Mark Greenberg, Maru Barrera and Hilary Llewellyn-Thomas contributed substantially to the conception and design of the study, revised the article critically for important intellectual content, and gave final approval of the version to be published. Lillian Sung contributed substantially to the conception and design of the study and the analysis and interpretation of the data, drafted the article and revised it critically for important intellectual content, and gave final approval of the version to be published.

Abstract

Background

The choice between palliative chemotherapy (defined as the use of cytotoxic medications delivered intravenously for the purpose of our study) and supportive care alone is one of the most difficult decisions in pediatric oncology, yet little is known about the preferences of parents and health care professionals. We compared the strength of these preferences by considering children’s quality of life and survival time as key attributes. In addition, we identified factors associated with the reported preferences.

Methods

We included parents of children whose cancer had no reasonable chance of being cured and health care professionals in pediatric oncology as participants in our study. We administered separate interviews to parents and to health care professionals. Visual analogue scales were shown to respondents to illustrate the anticipated level of the child’s quality of life, the expected duration of survival and the probability of cure (shown only to health care professionals). Respondents were then asked which treatment option they would favour given these baseline attributes. In addition, respondents reported what factors might affect such a decision and ranked all factors identified in order of importance. The primary measure was the desirability score for supportive care alone relative to palliative chemotherapy, as obtained using the threshold technique.

Results

A total of 77 parents and 128 health care professionals participated in our study. Important factors influencing the decision between therapeutic options were child quality-of-life and survival time among both parents and health care professionals. Hope was particularly important to parents. Parents significantly favoured chemotherapy (42/77, 54.5%) compared with health care professionals (20/128, 15.6%; p < 0.0001). The opinions of the physician and child significantly influenced the parents’ desire for supportive care; for health care professionals, the opinions of parents and children were significant factors influencing this decision.

Interpretation

Compared with health care professionals, parents more strongly favour aggressive treatment in the palliative phase and rank hope as a more important factor for making decisions about treatment. Understanding the differences between parents and health care professionals in the relative desirability of supportive care alone may aid in communication and improve end-of-life care for children with cancer.

Le texte complet de cet article est disponible en PDF.

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 Competing interests: None declared.
This article has been peer reviewed.
See related commentary by Knapp and Komatz at cmaj.111557
Funding: This work was supported by the Canadian Cancer Society (grant no. 016388). Lillian Sung is supported by the Canadian Institutes of Health Research through a New Investigator Award (grant no. 87719).


© 2011  Canadian Medical Association. Publié par Elsevier Masson SAS. Tous droits réservés.
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Vol 183 - N° 17

P. E1252-E1258 - novembre 2011 Retour au numéro
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