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

Rhodes, Ramona L.; Barrett, Nadine; Ejem, Deborah; Sloan, Danetta H.; Bullock, Karen; Bethea, Kenisha; Durant, Raegan W.; Anderson, Gloria; Hasan, Marisette; Travitz, Gracyn; Thompson, Anastatia; Johnson, Kimberly S.

doi:10.1016/j.jpainsymman.2022.07.009

Cited by 12 publications

(8 citation statements)

References 25 publications

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“…Similarly, multiple imputation cannot address bias due to nonmissing at random. Disparity in proportion of persons from minoritized racial groups between the groups occurred despite being a site selection criterion and oversampling, highlighting the ongoing challenges in recruiting minoritized populations . The single site and small numbers further preclude generalization, although corroboration of some previous results is promising …”

Section: Discussionmentioning

confidence: 99%

Patient Priorities–Aligned Care for Older Adults With Multiple Conditions

Tinetti,

Hashmi,

et al. 2024

JAMA Netw Open

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ImportanceOlder adults with multiple conditions receive health care that may be burdensome, of uncertain benefit, and not focused on what matters to them. Identifying and aligning care with patients’ health priorities may improve outcomes.ObjectiveTo assess the association of receiving patient priorities care (PPC) vs usual care (UC) with relevant clinical outcomes.Design, Setting, and ParticipantsIn this nonrandomized controlled trial with propensity adjustment, enrollment occurred between August 21, 2020, and May 14, 2021, with follow-up continuing through February 26, 2022. Patients who were aged 65 years or older and with 3 or more chronic conditions were enrolled at 1 PPC and 1 UC site within the Cleveland Clinic primary care multisite practice. Data analysis was performed from March 2022 to August 2023.InterventionHealth professionals at the PPC site guided patients through identification of values, health outcome goals, health care preferences, and top priority (ie, health problem they most wanted to focus on because it impeded their health outcome goal). Primary clinicians followed PPC decisional strategies (eg, use patients’ health priorities as focus of communication and decision-making) to decide with patients what care to stop, start, or continue.Main Outcomes and MeasuresMain outcomes included perceived treatment burden, Patient-Reported Outcomes Measurement Information System (PROMIS) social roles and activities, CollaboRATE survey scores, the number of nonhealthy days (based on healthy days at home), and shared prescribing decision quality measures. Follow-up was at 9 months for patient-reported outcomes and 365 days for nonhealthy days.ResultsA total of 264 individuals participated, 129 in the PPC group (mean [SD] age, 75.3 [6.1] years; 66 women [48.9%]) and 135 in the UC group (mean [SD] age, 75.6 [6.5] years; 55 women [42.6%]). Characteristics between sites were balanced after propensity score weighting. At follow-up, there was no statistically significant difference in perceived treatment burden score between groups in multivariate models (difference, −5.2 points; 95% CI, −10.9 to −0.50 points; P = .07). PPC participants were almost 2.5 times more likely than UC participants to endorse shared prescribing decision-making (adjusted odds ratio, 2.40; 95% CI, 0.90 to 6.40; P = .07), and participants in the PPC group experienced 4.6 fewer nonhealthy days (95% CI, −12.9 to −3.6 days; P = .27) compared with the UC participants. These differences were not statistically significant. CollaboRATE and PROMIS Social Roles and Activities scores were similar in the 2 groups at follow-up.Conclusions and RelevanceThis nonrandomized trial of priorities-aligned care showed no benefit for social roles or CollaboRATE. While the findings for perceived treatment burden and shared prescribing decision-making were not statistically significant, point estimates for the findings suggested that PPC may hold promise for improving these outcomes. Randomized trials with larger samples are needed to determine the effectiveness of priorities-aligned care.Trial RegistrationClinicalTrials.gov Identifier: NCT04510948

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Section: Discussionmentioning

confidence: 99%

Patient Priorities–Aligned Care for Older Adults With Multiple Conditions

Tinetti,

Hashmi,

et al. 2024

JAMA Netw Open

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“…Clinical trial evidence that informs care focuses primarily on preventing future events, optimizing disease-specific outcomes, or extending survival, outcomes defined by investigators, not by patients. Furthermore, as is well reported, this disease-specific evidence is extrapolated from studies in which women; older adults; Black, Hispanic, and other racially minoritized individuals; and persons with multimorbidity or disabilities are largely underrepresented relative to their proportion of the affected population . They may not enjoy the magnitude of disease-specific or survival benefits experienced by study participants who may be disproportionally younger, healthier, more socioeconomically advantaged, or White.…”

Section: Origin Of One-size-fits-all Health Inequitymentioning

confidence: 99%

“…Furthermore, as is well reported, this disease-specific evidence is extrapolated from studies in which women; older adults; Black, Hispanic, and other racially minoritized individuals; and persons with multimorbidity or disabilities are largely underrepresented relative to their proportion of the affected population. 2,3 They may not enjoy the magnitude of disease-specific or survival benefits experienced by study participants who may be disproportionally younger, healthier, more socioeconomically advantaged, or White. Moreover, individuals with multimorbidity or complex life circumstancesoftenprioritizecurrentsymptomsandfunction over future health events or prolonged survival.…”

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confidence: 99%

One Size Fits All—An Underappreciated Health Inequity

Tinetti,

Hladek,

Ejem

2024

JAMA Intern Med

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“…7 Further, under mandate by the Public Health Service Act, the National Institutes of Health (NIH) enacted policies to ensure the inclusion of women and racially minoritized groups in all NIH funded clinical research "in a manner that is appropriate to the scientific question under study" in hopes of making research findings more generalizable to the entire population. 8,9 Despite these efforts, significant variability has been noted in the reporting of race and ethnicity in the medical literature, [10][11][12][13][14] and additional variability and limitations in racial and ethnic diversity in study samples has also been noted. 13 AGS has set an objective that by 2031, 100% of research presented at the AGS Annual Scientific Meeting and published in JAGS will reflect the diversity of the population being studied.…”

mentioning

confidence: 99%

“…8,9 Despite these efforts, significant variability has been noted in the reporting of race and ethnicity in the medical literature, [10][11][12][13][14] and additional variability and limitations in racial and ethnic diversity in study samples has also been noted. 13 AGS has set an objective that by 2031, 100% of research presented at the AGS Annual Scientific Meeting and published in JAGS will reflect the diversity of the population being studied. 5 In keeping with the intersection of structural racism and ageism initiative, the JAGS Executive Leadership Group changed the author instructions and guidelines to use more appropriate language for race and ethnicity in manuscripts and formatting of those manuscripts accepted for publication.…”

mentioning

confidence: 99%