Introduction
Palliative care (PC) is a specialized medical discipline that has become an integral part of care for patients with cancer (Tan and Ramchandran Reference Tan and Ramchandran2020). The evidence indicates that incorporating PC into standard oncologic treatment can improve the quality of life and satisfaction for both patients and their caregivers (Dionne-Odom et al. Reference Dionne-Odom, Azuero and Lyons2015; McDonald et al. Reference McDonald, Swami and Hannon2016). PC specialists provide symptom management through expert symptom monitoring, sufficient patient-clinician communication and establishment of treatment plans that can address all facets of the patients’ needs (Senderovich and McFadyen Reference Senderovich and McFadyen2020). For patients with hematologic malignancies (HMs), receiving PC is particularly beneficial considering the high physical and psychological symptom burden these patients often experience from complications due to the disease and side effects from the intensive treatments (El-Jawahri et al. Reference El-Jawahri, Nelson and Gray2020; Kayastha and LeBlanc Reference Kayastha and LeBlanc2022). Studies demonstrate that patients with HM commonly present with severe fatigue, poor well-being, bodily pain, weight loss, anxiety, and depression (Boswell et al. Reference Boswell, Harris and Ip2023; Newcomb et al. Reference Newcomb, Nipp and Waldman2020). Furthermore, incorporation of early PC can reduce treatment costs and provide an opportunity for more holistic patient care (LeBlanc et al. Reference LeBlanc, Egan and Olszewski2018).
Although the evidence supports the inclusion of PC into standard oncology care, PC remains underused among patients with HM (El-Jawahri et al. Reference El-Jawahri, Nelson and Gray2020; Mohyuddin et al. Reference Mohyuddin, Abbasi and Ripp2020). According to reports, patients with HM frequently receive aggressive end-of-life care, which includes a higher risk of hospital death, toxic chemotherapy, and poor hospice use (LeBlanc and El-Jawahri Reference LeBlanc and El-Jawahri2018; Resick et al. Reference Resick, Sefcik and Arnold2020). Despite the evident inequities in the use of PC among most patients with HM, it is important to understand if there are racial differences in the utilization of PC, particularly among Black patients who may face additional barriers to accessingthese services. Black patients with HM experience significantly longer delay to receiving intensive and efficacious treatments such as stem cell transplantation (Bhatnagar et al. Reference Bhatnagar, Wu and Goloubeva2015). In addition, Black patients with HM have worse survival outcomes when compared to their White counterparts (Kirtane and Lee Reference Kirtane and Lee2017). This is concerning given that Black patients have a lower overall five-year survival rate for most cancers, including HM (American Cancer Society 2022).
The PC guidelines from the American Society of Clinical Oncology on integrating health equity indicate that there is a critical need for research data on these populations to tailor interventions and ensure cultural sensitivity and inclusion in PC delivery for underserved populations (Rosa et al. Reference Rosa, Garcia and Mardones2024). Therefore, the objective of this narrative scoping review is to identify and describe what is known about PC use among Black HM patients in the United States. This review contributes to the efforts aimed at reducing barriers and promoting the uptake of PC services within the Black HM community. The findings of this scoping review could also inform the design of future interventions aimed at promoting and ensuring that PC is administered with cultural understanding and sensitivity.
Methods
Design
This scoping review was conducted using the Joanna Briggs Institute approach for scoping reviews (Peters et al. Reference Peters, Marnie and Tricco2020) and reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA-ScR) extension for Scoping Reviews checklist (Tricco et al. Reference Tricco, Lillie and Zarin2018). We registered the protocol for this review in the Open Science Framework database (https://doi.org/10.17605/OSF.IO/75CAJ).
Information sources
The databases searched included MEDLINE (PubMed), Embase (Elsevier), CINAHL Complete (EBSCOhost and Web of Science (Clarivate). We selected those four databases because the Cochrane Handbook (section 4.3.1.1) advises that the search for studies for a review should be as thorough as possible to lower the risk of reporting bias and to find as much relevant information as feasible (Lefebvre et al. Reference Lefebvre, Glanville, Briscoe, Higgins, Thomas, Chandler, Cumpston, Li, Page and Welch2025). In addition, searching two or more databases reduces the risk of missing eligible studies (Ewald et al. Reference Ewald, Klerings and Wagner2022).
Search strategy
A medical librarian (L.L.) worked with the author team to plan and carry out the searches, which were based on three (3) key ideas: Black/African American, PC, and HMs. For each database, publication types like editorials, letters, comments, and conference abstracts were removed using search hedges or database filters. The search was conducted on June 24, 2024, and found 443 citations. An updated search was conducted on October 24, 2024, and no new citations were found to be included for further review. The Supplementary Materials contain comprehensive replicable search techniques for every database, including date ranges and search filters. A reference-list review of the final included articles was carried out by a study team member (OOA) to identify additional relevant evidence, and no further relevant articles were identified.
Eligibility criteria
We included publications that met the following criteria: (1) the sample included adult Black/African American with HMs (18 years and above); (2) a focus on PC strategies, interventions, or models of care including but not limited to end of life care, hospice care, palliative radiotherapy and palliative communication; and (3) employed qualitative, quantitative and/or mixed methods in a study conducted within the US. We excluded articles that focused on: (1) pediatric populations; (2) not published in English; and (3) opinion pieces, editorials, case reports, and systematic or scoping reviews.
Study selection
After the search process, the resulting citations were uploaded into Covidence (Veritas Health Innovation, Melbourne, Australia), a software system for managing systematic reviews, and 144 duplicates were removed by the software before screening. The title/abstract phase involved screening the remaining 299 citations. Both the title/abstract screening and the full text screening were performed independently by two reviewers (O.O.A. and S.S.D.). After a thorough analysis, articles that did not meet the eligibility criteria were excluded. Any conflicts between the reviewers were resolved through discussion among the reviewers. The article selection process is presented by flowchart per PRISMA guidelines (Figure 1).
PRISMA diagram for new systematic reviews which includes searches of databases and other sources.
Data extraction
We developed a customized data extraction chart in EXCEL and later transferred into a word document with the following sections: (1) authors and year, (2) study aim, (3) design, (4) study population, (5) characteristics of Blacks/African Americans participants included in the study, (6) HM type studied and (7) significant findings. All reviewers participated in a pilot testing of the data extraction template, which was then modified based on the input from the team. Data extraction was first done independently by one reviewer (O.O.A.) and verified in full by a second reviewer (S.S.D.). The differences in data between the two authors were discussed and resolved by all authors. The final data was discussed and approved by all four authors.
Synthesis of the evidence
Following extraction, the primary findings from the various evidence sources were examined. Through a discussion among the study team, the main findings were identified and described as per the aim of the review. The topics served as the basis for the narrative synthesis. All team members were involved in this process, and any disagreements were discussed to resolve any conflicts.
Results
Seven studies met the inclusion criteria after the full-text screening and were subsequently included in this review.
Study characteristics
All the included articles employed quantitative methods and were published between 2019 and 2024. Six were cohort studies (Al Hadidi et al. Reference Al Hadidi, Dongarwar and Salihu2021; Chan et al. Reference Chan, Taylor and Doucette2024; Fossum et al. Reference Fossum, Navarro and Farias2021; Han et al. Reference Han, Liu and Qin2019; Hsieh et al. Reference Hsieh, Yeo and Zou2024; Rao et al. Reference Rao, Belanger and Egan2021), and one was a cross-sectional study (Jackson et al. Reference Jackson, Jackson and Etuk2022). All the studies used samples generated from population-specific databases such as the National Cancer Database (Chan et al. Reference Chan, Taylor and Doucette2024; Fossum et al. Reference Fossum, Navarro and Farias2021), the National Inpatient Sample (Al Hadidi et al. Reference Al Hadidi, Dongarwar and Salihu2021; Han et al. Reference Han, Liu and Qin2019; Hsieh et al. Reference Hsieh, Yeo and Zou2024; Jackson et al. Reference Jackson, Jackson and Etuk2022), and the National Cancer Institute’s Surveillance, Epidemiology, and End Results-Medicare linked database (Rao et al. Reference Rao, Belanger and Egan2021).
Three of the 7 studies included participants who were diagnosed with multiple myeloma (Al Hadidi et al. Reference Al Hadidi, Dongarwar and Salihu2021; Fossum et al. Reference Fossum, Navarro and Farias2021; Jackson et al. Reference Jackson, Jackson and Etuk2022), 2 studies included a variety of HM such as leukemia, lymphoma, myelodysplastic syndrome, and myeloproliferative neoplasm (Hsieh et al. Reference Hsieh, Yeo and Zou2024; Rao et al. Reference Rao, Belanger and Egan2021), 1 study incorporated patients with acute myeloid leukemia (AML) (Chan et al. Reference Chan, Taylor and Doucette2024), and 1 did not specify the HM type. Black participants made up between 2% and 22.2% of the total participants included in most of the studies. The 3 studies that looked at only multiple myeloma patients had the highest number of Black participants at 20.4% (Fossum et al. Reference Fossum, Navarro and Farias2021), 20.44% (Al Hadidi et al. Reference Al Hadidi, Dongarwar and Salihu2021) and 22.2% (Jackson et al. Reference Jackson, Jackson and Etuk2022). The study that had the lowest number of Black participants (2%) looked at patients with AML (Chan et al. Reference Chan, Taylor and Doucette2024).
Main findings of included publications
The 3 publications that focused on multiple myeloma patients reported findings of statistically significant differences in PC use between Black and White patients. The article by FossumFossum et al. (Reference Fossum, Navarro and Farias2021) which examined racial/ethnic disparities in the use of palliative radiotherapy showed that Black patients were 13% less likely to receive this treatment within 12 months of being diagnosed with multiple myeloma compared to non-Hispanic Whites (OR = 0.87, 95% CI = 0.83–0.90, p < .0001). In the article by (Al Hadidi et al. Reference Al Hadidi, Dongarwar and Salihu2021), the researchers aimed to identify if the gaps in care for Hispanics and non-Hispanic Blacks with multiple myeloma had decreased over time. The study findings showed that non-Hispanic Blacks had lower odds of receiving PC consultations compared to Non-Hispanic Whites (OR = 0.91, 95% CI = 0.85–0.97, p = 0.01). Finally, the article by (Jackson et al. Reference Jackson, Jackson and Etuk2022) which evaluated the sociodemographic and hospital-level factors associated with PC utilization among hospitalized multiple myeloma patients reported that non-Hispanic Blacks were less likely to use PC compared to non-Hispanic Whites (adjusted OR = 0.86, 95% CI = 0.79–0.94).
One of the included publications reported similar findings in PC use between Black and White HM patients but did not add any statistical findings such as p-values or confidence intervals (Hsieh et al. Reference Hsieh, Yeo and Zou2024). For example, the researchers noted that the rate of PC use was higher in White patients compared to Black patients (56% vs 49%) and the use of PC was associated with lower hospital charges across all racial groups. In contrast, (Rao et al. Reference Rao, Belanger and Egan2021) reported something different in their study. Using a mixed-effects multivariable logistic regression model the authors reported that early billed PC services were rendered more frequently to Black patients when compared with White patients (OR = 1.45, 95% CI = 1.22–1.71, p < .001).
In 2 of the studies, race/ethnicity was not a significant predictor of the differences in PC use among patients with HM. The articles by (Chan et al. Reference Chan, Taylor and Doucette2024) and (Han et al. Reference Han, Liu and Qin2019) acknowledged that, even though there were reported differences in PC use between Black and White HM patients, these differences could not be attributed to the participants’ race or ethnicity. Table 1 presents an overview of the included articles with their significant findings.
Overview of included articles
Discussion
The purpose of this scoping review was to identify and describe what is known about PC use among Black HM patients in the US. This review has established that there is lower PC use among HM Black patients compared to their White counterparts (Al Hadidi et al. Reference Al Hadidi, Dongarwar and Salihu2021; Fossum et al. Reference Fossum, Navarro and Farias2021; Jackson et al. Reference Jackson, Jackson and Etuk2022). This ongoing inequity in the accessibility and utilization of PC among Black patients with HM makes it necessary for us to find creative ways to improve PC access and use within this community. One effective way would be to train current oncology nurses in providing some as aspects of PC, including symptom management, psychosocial support and advance care planning (Resick et al. Reference Resick, Sefcik and Arnold2020; Walling et al. Reference Walling, D’Ambruoso and Malin2017). This can be achieved through training programs that that promote integrating PC domains into everyday work routines (Artioli et al. Reference Artioli, Bedini and Bertocchi2019). Given their excellent clinical and collaborative abilities and cost-effective nature, nurses are well-positioned to bridge this gap (Walling et al. Reference Walling, D’Ambruoso and Malin2017). Studies have reported that nurses and nurse practitioners are effective in supporting the PC needs of oncology patients undergoing treatment (Lewis Reference Lewis2020; Mitchell et al. Reference Mitchell, Senior and Bibo2016). The addition of culturally trained PC nurse practitioners working as a part of a hematology-oncology team could influence the uptake of PC for the HM patient populations (Lewis Reference Lewis2020).
The representation of Black participants in the included studies, varied significantly depending on the type of HM being studied. We found that Black participants constituted between 2% and 22.2% of the study populations, with the highest representation observed in the studies focused solely on multiple myeloma patients (Al Hadidi et al. Reference Al Hadidi, Dongarwar and Salihu2021; Fossum et al. Reference Fossum, Navarro and Farias2021; Jackson et al. Reference Jackson, Jackson and Etuk2022). This was not surprising, given that multiple myeloma is known to disproportionately affect Black individuals more than other racial groups (Rajkumar et al. Reference Rajkumar2018). On the other hand, the lowest representation (2%) was in the study on AML patients (Chan et al. Reference Chan, Taylor and Doucette2024), pointing to a potential underrepresentation of Black individuals in AML research. Studies report that misunderstandings about PC (Johnson et al. Reference Johnson, Kuchibhatla and Tulsky2009), conflicting spiritual and cultural beliefs (Stockdill et al. Reference Stockdill, Dionne-Odom and Wells2023), and mistrust of the medical system due to historical unethical practices like the Tuskegee syphilis study (Hong et al. Reference Hong, Yi and Johnson2018) have all contributed to the reduced participation in research among Black individuals. Therefore, there is a pressing need to develop strategies to recruit and retain Black patients in PC research to promote equitable PC access and delivery.
Research on health care disparities exists in three phases: (1) establishing the presence of disparities; (2) understanding the causes and factors contributing to those disparities, and (3) developing and testing interventions to eliminate those disparities (Kilbourne et al. Reference Kilbourne, Switzer and Hyman2006). In our review, all the included publications focused on establishing evidence of disparities in PC use, as such there’s the need for more research in the other two phases. According to (Johnson Reference Johnson2013), research aimed at understanding the factors that contribute to the disparities in PC use should incorporate prospective, longitudinal studies that assess possible moderators and mediators of PC inequalities at several levels, including the patient, clinician, and health care system or organization. Additionally, these studies should also be done with an eye towards building testable interventions focused on improving PC delivery for this patient population. Instead of promoting a limited approach to PC delivery, it is important to design and evaluate care models that can consider the cultural beliefs, values, and preferences of this patient group (Johnson Reference Johnson2013). The creation and testing of these interventions should also be grounded in current and developing evidence in the field (Hanson et al. Reference Hanson, Armstrong and Green2013).
Strengths and limitations
This review highlights critical gaps that require further attention to improve the PC access and use among Black HM patients in the US. Our study’s strength lies in the comprehensive approach we used to identify and describe what is known about PC use among Black HM patients in the US. Despite our findings, some limitations should be noted. First, since this review focused on PC, we only included studies that were self-identified as PC, end of life care, or hospice care; however, we may have missed studies that used alternative phrases for PC, EOL, and hospice. In addition, bias could have crept into the review due to resolving the conflicts by discussion and not conducting dual independent data extraction.
Conclusion
We conducted a scoping review to identify and describe what is known about PC use among Black HM patients. Most of the articles focused on documenting disparities in access to PC use rather than investigating the root causes of these disparities. Further research is needed to understand the determinants of these disparities and to also build testable interventions to improve PC use within this underserved population.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951525000471.
Funding statement
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Competing interests
The author(s) declare none.
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