Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

Tomlinson, Deborah; Bartels, Ute; Gammon, Janet; Hinds, Pamela S.; Volpe, Jocelyne; Bouffet, Éric; Regier, Dean A.; Baruchel, Sylvain; Greenberg, Mark; Barrera, Maru; Llewellyn‐Thomas, Hilary A.; Sung, Lillian

doi:10.1503/cmaj.110392

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Canadian Medical Association Journal

2011

DOI: 10.1503/cmaj.110392

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Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

Deborah Tomlinson¹,

Ute Bartels²,

Janet Gammon³

et al.

Abstract: 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. AbstractSee related commentary by Knapp and Komatz at www.cmaj.ca/lookup

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Cited by 76 publications

(77 citation statements)

References 11 publications

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“…7 Extensions of this work are warranted. Future studies might explore how these results differ for programs where curative and supportive teams are integrated.…”

mentioning

confidence: 95%

“…6 In their recent study published in CMAJ, Tomlinson and colleagues add to the scant information available on end-of-life decision-making for children and pediatric palliative care. 7 The purpose of their study was to compare preferences for end-of-life treatment between health care workers and parents of children who were not expected to survive. A total of 77 parents and 128 health care workers participated in the fouryear study.…”

mentioning

confidence: 99%

“…Finally, the study by Tomlinson and colleagues 7 is important because of its design and rigor. The study team pilot-tested the visual aids and interview guide with 12 parents whose children had died from cancer.…”

mentioning

confidence: 99%

“…Tomlinson and colleagues are to be commended for consistently doing their study over four years. 7 Such an endeavour takes commitment from everyone involved. Compared with many populations, 77 completed interviews may seem small; however, for researchers in this field, it is an impressive number that should be acknowledged.…”

mentioning

confidence: 99%

“…When families become familiar with both concepts, the eventual transition should be easier for parents to accept. The framework set forth by Tomlinson and colleagues 7 could be used in such a groundbreaking study.…”

mentioning

confidence: 99%

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Preferences for end-of-life care for children with cancer

Knapp¹,

Komatz²

2011

Canadian Medical Association Journal

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“…7 Extensions of this work are warranted. Future studies might explore how these results differ for programs where curative and supportive teams are integrated.…”

mentioning

confidence: 95%

mentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

See 3 more Smart Citations

Preferences for end-of-life care for children with cancer

Knapp¹,

Komatz²

2011

Canadian Medical Association Journal

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Tumor border configuration added to TNM staging better stratifies stage II colorectal cancer patients into prognostic subgroups

Zlobec

Baker

Minoo

et al. 2009

Cancer

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Decision making in pediatric cancer is particularly difficult. There may be uncertainty about prognosis, and long‐term survival estimates from trials may not be applicable to current patients. There are many motivations to conduct research into patient and provider decision making. This review discusses three approaches to understanding decision making, namely decision analysis, the threshold technique and discrete choice experiment. These techniques are applied to situations in pediatric oncology to illustrate how the results may be useful for patient care. Future work in pediatric oncology decision making should focus on methods to facilitate decision making and elicit preferences from children themselves. Pediatr Blood Cancer 2013; 60: 558–563. © 2012 Wiley Periodicals, Inc.

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Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature

Haines

Frost

Kane

et al. 2018

Cancer

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Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases. In total, 71 articles were reviewed. Barriers to accessing pediatric palliative care were categorized according to the 4 levels of a modified socioecological model (ie, barriers related to policy/payment, health systems, organizations, and individuals). Major themes identified at each level included: 1) the lack of consistent and adequate funding mechanisms at the policy/payment level, 2) the lack of pediatric palliative care programs and workforce at the health systems level, 3) difficulties integrating palliative care into existing pediatric oncology care models at the organizational level, and 4) the lack of knowledge about pediatric palliative care, discomfort with talking about death, and cultural differences between providers and patients and their families at the individual level. Recommendations to address each of the barriers identified in the literature are included. Cancer 2018;124:2278-88. © 2018 American Cancer Society.

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Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

Cited by 76 publications

References 11 publications

Preferences for end-of-life care for children with cancer

Preferences for end-of-life care for children with cancer

Tumor border configuration added to TNM staging better stratifies stage II colorectal cancer patients into prognostic subgroups

Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature

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