Abstract
Context
Despite documented racial and ethnic disparities in care, there is significant variability
in representation, reporting, and analysis of race and ethnic groups in the hospice
and palliative medicine (HPM) literature.
Objectives
To evaluate the race and ethnic diversity of study participants and the reporting
of race and ethnicity data in HPM research.
Methods
Adult patient and/or caregiver-centered research conducted in the U.S. and published
as JPSM Original Articles from January 1, 2015, through December 31, 2019, were identified.
Descriptive analyses were used to summarize the frequency of variables related to
reporting of race and ethnicity.
Results
Of 1253 studies screened, 218 were eligible and reviewed. There were 78 unique race
and ethnic group labels. Over 85% of studies included ≥ one non-standard label based
on Office of Management and Budget designations. One-quarter of studies lacked an
explanation of how race and ethnicity data were collected, and 83% lacked a rationale.
Over half did not include race and/or ethnicity in the analysis, and only 14 studies
focused on race and/or ethnic health or health disparities. White, Black, Hispanic,
Asian, American Indian or Alaska Native, and Native Hawaiian or Other Pacific Islander
persons were included in 95%, 71%, 43% 37%,10%, and 4% of studies. In 92% of studies
the proportion of White individuals exceeded 57.8%, which is their proportion in the
U.S. population.
Conclusion
Our findings suggest there are important opportunities to standardize reporting of
race and ethnicity, strive for diversity, equity, and inclusion among research participants,
and prioritize the study of racial and ethnic disparities in HPM research.
Key Words
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Article info
Publication history
Published online: July 25, 2022
Accepted:
July 21,
2022
Identification
Copyright
Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
