The Lack of Standard Definitions in the Supportive and Palliative Oncology Literature

Abstract

Context Multiple organizations have raised concerns about the lack of standard definitions for terminology in the supportive and palliative oncology literature. Objectives We aimed to determine: 1) the frequency of 10 commonly used terms in the supportive and palliative oncology literature; 2) the proportion of articles that provided definitions for each term; and 3) how each term was defined. Methods We systematically searched MEDLINE, PubMed, PsycINFO, the Cochrane Library, Embase, ISI Web of Science, and CINAHL for original studies, review articles and systematic reviews related to palliative care and cancer in the first six months of 2004 and 2009. We counted the number of occurrences for “palliative care,” “supportive care,” “best supportive care,” “hospice care,” “terminal care,” “end-of-life,” “terminally ill,” “goals of care,” “actively dying,” and “transition of care” in each article, reviewed them for the presence of definitions, and documented the journal characteristics. Results Among the 1213 articles found, 678 (56%) were from 2009. “Palliative care” and “end-of-life” were the most frequently used terms. “Palliative care,” “end-of-life” and “terminally ill” appeared more frequently in palliative care journals, while “supportive care” and “best supportive care” were used more often in oncology journals (P<0.001). Among 35 of 601 (6%) articles with a definition for “palliative care,” there were 16 different variations (21 of 35 articles used the World Health Organization definition). “Hospice care” had 13 definitions among 13 of 151 (9%) articles. “Supportive care” and other terms were rarely defined (less than 5% of articles that used the term). Conclusion Our findings highlight the lack of definitional clarity for many important terms in the supportive and palliative oncology literature. Standard definitions are needed to improve administrative, clinical and research operations.

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Conceptual Models for Integrating Palliative Care at Cancer Centers

“…The main definitions for both areas have been provided by the World Health Organization, the Multinational Association of Supportive Care in Cancer, the American Academy of Hospice and Palliative Medicine, the International Association for Hospice and Palliative Care, and the American Society of Clinical Oncology. 31 Our team has been directly involved in all these organizations.…”

A Pilot Study To Define Chemical Coping in Cancer Patients Using the Delphi Method

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