Research that addresses the compounding effects of age and race/ethnicity on access to quality health care and patient-centered outcomes such as physical function, frailty, and survival continues to be an emerging area of inquiry in hematology. Accordingly, novel research employing qualitative and quantitative methodologic approaches was presented at the 2022 American Society of Hematology (ASH) Annual Meeting and Exposition.
Here we focus on multiple myeloma and sickle cell disease as examples of malignant and nonmalignant hematologic disorders for which Black Americans are disproportionately burdened and suffer a “double disadvantage” to their health because of the interactive effects of age and race. In addition, we highlight studies focused on access to quality health care, physical and mental health outcomes, and frailty assessments.
Shakira J. Grant, MBBS
Charity Oyedeji, MD
Barriers to Multiple Myeloma–Related Care and Clinical Trials
At the 2022 ASH meeting, Grant et al presented study findings based on qualitative semistructured interview data collected from 21 older adult dyads.1 Each dyad consisted of a patient with multiple myeloma paired with an informal caregiver. Of the enrolled participants, 52% self-identified as Black, and approximately 38% resided in North Carolina communities with the greatest social vulnerability (ie, greatest poverty, transportation barriers, and housing instability). The study team identified barriers to accessing multiple myeloma–related care, including delays in receiving a diagnosis of multiple myeloma and subsequently delayed referrals to a hematologist/oncologist for specialty care. Additionally, participants who resided in North Carolina communities with moderate to high social vulnerability often discussed transportation and financial barriers (eg, parking costs and insurance concerns) that limited access to cancer-related services.1
Another qualitative study, led by Grant et al, examined factors influencing Black participation in clinical trials.2 This study, conducted at the University of North Carolina’s Lineberger Comprehensive Cancer Center, enrolled 23 older Black adults with multiple myeloma (mean age, 58 years) and 13 White hematologists who participated in either a single focus group or a 1:1 semistructured interview, respectively.
During two oral presentations, Dr. Grant highlighted patient trust in the hematologist and health-care system as a critical determinant of whether Black persons chose to participate in a clinical trial. Additionally, this research highlighted the role of bias and stereotyping on the part of hematologists based on patient age, race/ethnicity, and socioeconomic status as another critical determinant of whether Black patients were even offered the opportunity to enroll in a clinical trial.2
In the second abstract, the presenter focused on examining the influence of power (defined as a characteristic of social relationships that has the potential to exert influence over material, human, and intellectual resources)3 within the patient-hematologist relationship on clinical trial enrollment of Black participants. This study demonstrated three types of power:
These studies provided a more comprehensive understanding of the barriers to quality care experienced by patients and caregivers affected by multiple myeloma while also learning from the hematologists about perceived barriers to trial participation for Black Americans. The study findings also offered several participant-driven strategies to address the identified barriers. Among these priority areas were interventions that targeted the following:
The Effects of Racism on Patient-Centered Outcomes
With most individuals who have sickle cell disease in the United States identifying as Black, many patients often recount experiences of disease-related stigma and provider bias that negatively influence their health-care experiences. For example, the Improving Patient Outcomes with Respect and Trust (IMPORT) study demonstrated that patients with sickle cell disease were more likely to report race-based discrimination from health-care providers than African Americans in the general population.5 In addition, disease-based discrimination was associated with patient-reported pain intensity.5
At the 2022 ASH meeting, Gaurino et al explored the relationship between stigma and self-efficacy in the IMPORT cohort using a network analysis.6 They demonstrated that stigma, trust in doctors, and education level were significantly associated with the Pain Catastrophizing Score (PCS). Each unit increase in stigma was associated with an increase in PCS by 1 (P < .001).6 More trust in institutions and older age were associated with increased self-care. However, the authors found that stigma was negatively associated with self-efficacy. These findings are consistent with prior studies that have demonstrated the association between stigma and experience with discrimination leading to adverse health outcomes for this population.
Karvonen et al presented study findings evaluating the effect of racism on mental and physical outcomes for 48,200 cancer survivors registered between 2014 and 2020 in the Behavioral Risk Factor Surveillance System database.7 For this analysis, experienced racism was framed as negative physical and emotional symptoms in reaction to perceived racism. Non-Hispanic Black survivors were 1.46 (95% confidence interval = 1.39–1.54) times more likely to report inadequate sleep and poor mental health than non-Hispanic White survivors. Of the cancer survivors who experienced physical or emotional racism-related distress, 32% to 59% experienced adverse health outcomes such as poor physical health, inadequate sleep, activity limitations, poor mental health, and diagnosed depression.7
This study highlights the need for future strategies to encourage screening for patient episodes of racism that may be experienced in health care and tailored interventions to mitigate the potential adverse health outcomes associated with experiencing racism.
Frailty Concerns in Multiple Myeloma and Sickle Cell Disease
Because of the debilitating nature of these diseases and, in the case of multiple myeloma, the predilection for older age at diagnosis, frailty (defined as increased vulnerability to adverse health outcomes due to physiologic decline) is a genuine concern in these patient populations. In multiple myeloma, scales such as the International Myeloma Working Group’s (IMWG) Frailty Index,8 Revised Myeloma Comorbidity Index,9 and Facon Simplified Frailty Scale10 have been developed to help account for the heterogeneity of aging and the varying fitness/frailty status. However, uncertainty remains about the optimal tool to assess frailty and the frequency of the assessments. For those living with sickle cell disease, improved life expectancy makes evaluating function and frailty status in older adults a highly relevant topic.
Mian and colleagues presented data from an ongoing prospective multisite Canadian study (MFRAIL) measuring the prevalence of geriatric impairments and frailty in adults with newly diagnosed multiple myeloma, currently ongoing at three sites in Ontario.11 Since the study’s inception in 2021, 54 patients have enrolled, each receiving a baseline geriatric assessment, which is then repeated at 12 months. The median age of enrolled participants was 71 (range, 47–93 years). The prevalence of frailty ranged from 12.3% (Fried Frailty Index), 17.5% (Mayo Frailty Index), 38.6% (IMWG Frailty Index), to 52.6% (Facon Simplified Frailty Scale).
In another study of 4,617 adults with multiple myeloma (aged 66 and older) receiving first-line therapy between 2007 and 2014 and registered in the Surveillance Epidemiology End Results (SEER)-Medicare data set, 39% were considered as moderately or severely frail (cumulative deficits model) at baseline.12 At 1 year after diagnosis of multiple myeloma, 15% of patients had an improved frailty status, 33% had a deterioration in frailty status, 26% remained the same in terms of frailty, and 25% had died.
Oyedeji et al presented a pilot study characterizing frailty in adults with sickle cell disease using the Fried Frailty Index phenotype.13 Older age was defined in this study as 40 years or older, given the shorter predicted life expectancy of adults with sickle cell disease (fifth decade) compared with the general population. Frailty was assessed in 28 participants at baseline, with 93% (n = 26) completing the entire assessment; difficulty performing the assessment was not a reported barrier. The mean age of participants was 46 (range, 19–77 years), with 68% categorized as older. Most participants had a severe genotype of sickle cell disease (HbSS or HbSβ0 thalassemia).
One person was considered frail (at least three out of five deficits in gait speed, grip strength, unintentional weight loss, low physical activity, or exhaustion). Many participants (58%, n = 15) were prefrail (meeting one or two criteria), and 38% (n = 10) were robust (no deficits). Exhaustion was the most common reason why participants met the criteria for being prefrail. Prefrail/frail participants had poorer aerobic endurance based on a 6-minute walk distance compared with robust participants (414 vs 492 meters; P = .03) and were more likely to have been hospitalized within the past year (38% vs 0%; P = .05) compared with robust participants.
This timely work demonstrated the feasibility and acceptability of assessing frailty in adults with sickle cell disease and the clinical significance of characterizing the fitness level of this patient population. This particular focus is especially relevant given that there are no existing validated frailty assessment tools specifically developed for the sickle cell disease population. Furthermore, this work provides the foundation for future studies to develop interventions that target adults with sickle cell disease who are considered prefrail to improve or maintain the function and fitness level of adults with sickle cell disease as they age.
Dr. Grant is a Geriatric-Hematologist-Oncologist and Assistant Professor–tenure track in the Division of Hematology at the University of North Carolina at Chapel Hill. Dr. Oyedeji is Assistant Professor in the Division of Hematology at Duke University.
DISCLOSURE: Dr. Grant has received research support from the National Cancer Institute Grant No. 5-K12-CA120780-1, National Institute on Aging Grant No. 1 R03 AG074030-01, and the Jimmy V. Foundation for Cancer Research Grant No. A21-0961-00. Dr. Oyedeji has received research support from the National Institute on Aging Grant No. 1 R03 AG074054-01 and has received support from the Duke Center for Research to Advance Healthcare Equity (REACH Equity), which is supported by the National Institute on Minority Health and Health Disparities under award number U54MD012530.
1. Erisnor G, Mills J, Mihas P, et al: ‘...Paying to be a patient in the hospital and the parking lot’: Dyadic perspectives on multiple myeloma-related healthcare access barriers. 2022 ASH Annual Meeting and Exposition. Abstract 172. Presented December 10, 2022.
2. Grant SJ, Jean-Baptiste M, Moore M, et al: ‘If you don’t trust your doctor that much...you’d feel less confident doing a research study’: Factors influencing Black patient participation in hematology trials. 2022 ASH Annual Meeting and Exposition. Abstract 380. Presented December 10, 2022.
3. Beisecker AE: Patient power in doctor-patient communication: What do we know? Health Communication 2:105-122, 1990.
4. Grant SJ, Jean-Baptiste M, Moore M, et al: ‘You have your knowledge, but I have my knowledge of my body’: The hematologist-patient relationship and enrollment of Black participants in clinical trials. 2022 ASH Annual Meeting and Exposition. Abstract 383. Presented December 10, 2022.
5. Haywood C Jr, Diener-West M, Strouse J, et al: Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease. J Pain Symptom Manage 48:934-943, 2014.
6. Guarino SH, Subedi K, Bakare O, et al: Self-efficacy and stigma in adults with sickle cell disease: An IMPORT study analysis. 2022 ASH Annual Meeting and Exposition. Abstract 900. Presented December 12, 2022.
7. Karvonen K, Balay-Dustrude E, Do A, et al: Race, ethnicity and experienced racism are associated with adverse physical and mental health outcomes among cancer survivors. 2022 ASH Annual Meeting and Exposition. Abstract 382. Presented December 10, 2022.
8. Palumbo A, Bringhen S, Mateos MV, et al: Geriatric assessment predicts survival and toxicities in elderly myeloma patients: An International Myeloma Working Group report. Blood 125:2068-2074, 2015.
9. Engelhardt M, Domm AS, Dold SM, et al: A concise revised Myeloma Comorbidity Index as a valid prognostic instrument in a large cohort of 801 multiple myeloma patients. Haematologica 102:910-921, 2017.
10. Facon T, Dimopoulos MA, Meuleman N, et al: A simplified frailty scale predicts outcomes in transplant-ineligible patients with newly diagnosed multiple myeloma treated in the FIRST (MM-020) trial. Leukemia 34:224-233, 2020.
11. Mian HS, Louzada ML, McCurdy A, et al: Variable frailty categorization among real-world patient with multiple myeloma: A prospective cohort study (MFRAIL). Blood 140(suppl 1):2395-2396, 2022.
12. Mian HS, Wildes T, Vij R, et al: Need for dynamic frailty risk assessment among older adults with multiple myeloma: A population-based cohort study. Blood 140(suppl 1):423-424, 2022.
13. Oyedeji CI, Faldowski R, Morey M, et al: Characterizing frailty in adults with sickle cell disease using frailty phenotype. 2022 ASH Annual Meeting and Exposition. Abstract 2245. Presented December 10, 2022.