Advertisement

A Review of Race and Ethnicity in Hospice and Palliative Medicine Research: Representation Matters

      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

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Journal of Pain and Symptom Management
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Barrett NJ
        • Hasan M
        • Bethea K
        • Johnson KS.
        The fierce urgency of now: addressing racial and ethnic disparities in serious illness care.
        N C Med J. 2020; 81 (Epub 2020/07/10PubMed PMID: 32641461): 254-256https://doi.org/10.18043/ncm.81.4.254
        • Anderson KO
        • Green CR
        • Payne R.
        Racial and ethnic disparities in pain: causes and consequences of unequal care.
        J Pain. 2009; 10 (Epub 2009/12/01PubMed PMID: 19944378): 1187-1204https://doi.org/10.1016/j.jpain.2009.10.002
        • Kamal AH
        • Bull J
        • Wolf SP
        • et al.
        Unmet needs of African Americans and whites at the time of palliative care consultation.
        Am J Hosp Palliat Care. 2017; 34 (Epub 2016/02/19PubMed PMID: 26888883): 461-465https://doi.org/10.1177/1049909116632508
        • Johnson KS
        • Kuchibhatla M
        • Tulsky JA.
        What explains racial differences in the use of advance directives and attitudes toward hospice care?.
        J Am Geriatr Soc. 2008; 56 (Epub 2008/09/06PubMed PMID: 18771455; PMCID: PMC2631440): 1953-1958https://doi.org/10.1111/j.1532-5415.2008.01919.x
        • Rhodes RL
        • Ukoha NCE
        • Williams KA
        • et al.
        Understanding underuse of advance care planning among a cohort of African American patients with advanced cancer: formative research that examines gaps in intent to discuss options for care.
        Am J Hosp Palliat Care. 2019; 36 (Epub 2019/04/23PubMed PMID: 31006248; PMCID: PMC7360090): 1057-1062https://doi.org/10.1177/1049909119843276
        • Mack JW
        • Paulk ME
        • Viswanath K
        • Prigerson HG.
        Racial disparities in the outcomes of communication on medical care received near death.
        Arch Intern Med. 2010; 170 (Epub 2010/09/30PubMed PMID: 20876403; PMCID: PMC3739279): 1533-1540https://doi.org/10.1001/archinternmed.2010.322
        • Davis MP
        • Temel JS
        • Balboni T
        • Glare P.
        A review of the trials which examine early integration of outpatient and home palliative care for patients with serious illnesses.
        Ann Palliat Med. 2015; 4 (Epub 2015/08/02PubMed PMID: 26231807): 99-121https://doi.org/10.3978/j.issn.2224-5820.2015.04.04
        • Unroe KT
        • Greiner MA
        • Johnson KS
        • Curtis LH
        • Setoguchi S.
        Racial differences in hospice use and patterns of care after enrollment in hospice among Medicare beneficiaries with heart failure.
        Am Heart J. 2012; 163 (e3. Epub 2012/06/20PubMed PMID: 22709751): 987-993https://doi.org/10.1016/j.ahj.2012.03.006
        • Johnson KS.
        Racial and ethnic disparities in palliative care.
        J Palliat Med. 2013; 16 (Epub 2013/10/01PubMed PMID: 24073685; PMCID: PMC3822363): 1329-1334https://doi.org/10.1089/jpm.2013.9468
        • Elk R
        • Felder TM
        • Cayir E
        • Samuel CA.
        Social inequalities in palliative care for cancer patients in the United States: a structured review.
        Semin Oncol Nurs. 2018; 34 (Epub 2018/08/28PubMed PMID: 30146346; PMCID: PMC7233309): 303-315https://doi.org/10.1016/j.soncn.2018.06.011
        • Ditillo BA.
        The emergence of palliative care: a new specialized field of medicine requiring an interdisciplinary approach.
        Crit Care Nurs Clin North Am. 2002; 14 (Epub 2002/06/01PubMed PMID: 12038498): 127-132https://doi.org/10.1016/s0899-5885(01)00002-8
        • Pirl WF
        • Saez-Flores E
        • Schlumbrecht M
        • et al.
        Race and ethnicity in the evidence for integrating palliative care into oncology.
        J Oncol Pract. 2018; 14 (Epub 2018/05/31PubMed PMID: 29813013): e346-ee56https://doi.org/10.1200/JOP.17.00016
        • Diop MS
        • Rudolph JL
        • Zimmerman KM
        • Richter MA
        • Skarf LM.
        Palliative care interventions for patients with heart failure: a systematic review and meta-analysis.
        J Palliat Med. 2017; 20 (Epub 2016/12/03PubMed PMID: 27912043; PMCID: PMC5177994): 84-92https://doi.org/10.1089/jpm.2016.0330
        • Jones T
        • Luth EA
        • Lin SY
        • Brody AA.
        Advance care planning, palliative care, and end-of-life care interventions for racial and ethnic underrepresented groups: a systematic review.
        J Pain Symptom Manage. 2021; 62 (Epub 2021/05/14PubMed PMID: 33984460; PMCID: PMC8419069): e248-ee60https://doi.org/10.1016/j.jpainsymman.2021.04.025
        • Brown CE
        • Curtis JR
        • Doll KM.
        A race-conscious approach toward research on racial inequities in palliative care.
        J Pain Symptom Manage. 2021; (Epub 2021/12/03PubMed PMID: 34856335)https://doi.org/10.1016/j.jpainsymman.2021.11.012
        • Bazargan M
        • Bazargan-Hejazi S.
        Disparities in palliative and hospice care and completion of advance care planning and directives among non-hispanic blacks: a scoping review of recent literature.
        Am J Hosp Palliat Care. 2021; 38 (Epub 2020/12/09PubMed PMID: 33287561; PMCID: PMC8083078): 688-718https://doi.org/10.1177/1049909120966585
        • Umaretiya PJ
        • Wolfe J
        • Bona K.
        Naming the problem: a structural racism framework to examine disparities in palliative care.
        J Pain Symptom Manage. 2021; (Epub 2021/08/18PubMed PMID: 34400277)https://doi.org/10.1016/j.jpainsymman.2021.07.035
      1. Boyd RW, Lindo, EG, Weeks, LD., McLemore, MR. On racism: a new standard for publishing on racial health inequities health Affairs 2020 [cited 2021 December 20]. Available from:https://www.healthaffairs.org/do/10.1377/hblog20200630.939347/full/.

        • Jones KF
        • Laury E
        • Sanders JJ
        • et al.
        Top ten tips palliative care clinicians should know about delivering antiracist care to black Americans.
        J Palliat Med. 2021; (Epub 2021/11/18PubMed PMID: 34788577)https://doi.org/10.1089/jpm.2021.0502
        • Quest TE
        • Periyakoil VS
        • Quill TE
        • Casarett D.
        Racial equity in palliative care.
        J Pain Symptom Manage. 2021; 61 (Epub 2020/12/22PubMed PMID: 33346065): 435-437https://doi.org/10.1016/j.jpainsymman.2020.12.005
        • Moore DB.
        Reporting of race and ethnicity in the ophthalmology literature in 2019.
        JAMA Ophthalmol. 2020; 138 (Epub 2020/06/20PubMed PMID: 32556206; PMCID: PMC7303899): 903-906https://doi.org/10.1001/jamaophthalmol.2020.2107
        • Zhang F
        • Finkelstein J.
        Inconsistency in race and ethnic classification in pharmacogenetics studies and its potential clinical implications.
        Pharmgenomics Pers Med. 2019; 12 (Epub 2019/07/17PubMed PMID: 31308725; PMCID: PMC6612983): 107-123https://doi.org/10.2147/PGPM.S207449
        • Drevdahl D
        • Taylor JY
        • Phillips DA.
        Race and ethnicity as variables in Nursing Research, 1952-2000.
        Nurs Res. 2001; 50 (Epub 2001/09/26PubMed PMID: 11570716): 305-313https://doi.org/10.1097/00006199-200109000-00009
        • Drevdahl DJ
        • Philips DA
        • Taylor JY.
        Uncontested categories: the use of race and ethnicity variables in nursing research.
        Nurs Inq. 2006; 13 (Epub 2006/02/24PubMed PMID: 16494667): 52-63https://doi.org/10.1111/j.1440-1800.2006.00305.x
        • Flanagin A
        • Frey T
        • Christiansen SL
        Committee AMAMoS. Updated guidance on the reporting of race and ethnicity in medical and science journals.
        JAMA. 2021; 326 (Epub 2021/08/18PubMed PMID: 34402850): 621-627https://doi.org/10.1001/jama.2021.13304
        • Harris PA
        • Taylor R
        • Minor BL
        • et al.
        The REDCap consortium: building an international community of software platform partners.
        J Biomed Inform. 2019; 95 (Epub 2019/05/13PubMed PMID: 31078660; PMCID: PMC7254481)103208https://doi.org/10.1016/j.jbi.2019.103208
        • Harris PA
        • Taylor R
        • Thielke R
        • et al.
        Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support.
        J Biomed Inform. 2009; 42 (Epub 2008/10/22PubMed PMID: 18929686; PMCID: PMC2700030): 377-381https://doi.org/10.1016/j.jbi.2008.08.010
      2. Standards for the classification of federal data on race and ethnicity office of management and budget; 1995 [cited 2021 December 20]. Available from: https://obamawhitehouse.archives.gov/omb/fedreg_race-ethnicity.

        • Durch JS
        • Madans JH.
        Methodological issues for vital rates and population estimates: 1997 OMB standards for data on race and ethnicity.
        Vital Health Stat. 2001; 4 (Epub 2001/10/31. PubMed PMID: 11682724): 1-30
        • Lewis MA
        • Zhao F
        • Jones D
        • et al.
        Neuropathic symptoms and their risk factors in medical oncology outpatients with colorectal vs. breast, lung, or prostate cancer: results from a prospective multicenter study.
        J Pain Symptom Manage. 2015; 49 (Epub 2015/01/18PubMed PMID: 25596011; PMCID: PMC4479969): 1016-1024https://doi.org/10.1016/j.jpainsymman.2014.11.300
        • Frey TaY R.K.
        Race and ethnicity in: committee AMoS, editor.
        AMA manual of style: A guide for authors and editors. 11th ed. Oxford University Press, 2020
      3. NIH policy on reporting race and ethnicity data: subjects in clinical research national institutes of health [cited 2022 January 28]. Available from: https://grants.nih.gov/grants/guide/notice-files/not-od-01-053.html.

      4. Parker K, Horowitz, JM, Morin, R, Lopez, MH. Multiracial in America: pew research center; 2015 [cited 2022 May 19,]. Available from: https://www.pewresearch.org/social-trends/2015/06/11/multiracial-in-america/.

        • Bhopal R
        • Donaldson L.
        White, European, Western, Caucasian, or what? Inappropriate labeling in research on race, ethnicity, and health.
        Am J Public Health. 1998; 88 (Epub 1998/09/16PubMed PMID: 9736867; PMCID: PMC1509085): 1303-1307https://doi.org/10.2105/ajph.88.9.1303
        • Grafova IB
        • Jarrin OF.
        Beyond black and white: mapping misclassification of medicare beneficiaries race and ethnicity.
        Med Care Res Rev. 2021; 78 (Epub 2020/07/08PubMed PMID: 32633665; PMCID: PMC8602956): 616-626https://doi.org/10.1177/1077558720935733
        • Jarrin OF
        • Nyandege AN
        • Grafova IB
        • Dong X
        • Lin H
        Validity of race and ethnicity codes in medicare administrative data compared with gold-standard self-reported race collected during routine home health care visits.
        Med Care. 2020; 58 (Epub 2019/11/07PubMed PMID: 31688554; PMCID: PMC6904433): e1-e8https://doi.org/10.1097/MLR.0000000000001216
        • Bilheimer LT
        • Sisk JE.
        Collecting adequate data on racial and ethnic disparities in health: the challenges continue.
        Health Aff (Millwood). 2008; 27 (Epub 2008/03/12PubMed PMID: 18332493): 383-391https://doi.org/10.1377/hlthaff.27.2.383
      5. What the new census data shows about race depends on how you look at it NPR; 2021 [cited 2022 January 28]. Available from: https://www.npr.org/2021/08/13/1014710483/2020-census-data-us-race-ethnicity-diversity.

      6. Understanidng racial and ethnic differences in health in late life. Bulato RA, Anderson, N.B., editor. Washington (DC): National Academies Press (US); 2004.

      7. Journal of pain and symptom management: guide for authors elsevier; 2021 [cited 2021 December 20]. Available from: https://www.elsevier.com/journals/journal-of-pain-and-symptom-management/0885-3924/guide-for-authors.