Symptom Burden Is Lower in Asian and Pacific Islander and Black Men Admitted to Home-Based Palliative Care in an Integrated Health Care System

Introduction

Little is known about racial/ethnic disparities in symptom severity among patients living with serious illness and receiving home-based palliative care (HomePal). However, the limited existing research on patients with advanced cancers suggests that symptom severity for patients of color is often worse than that for White patients.^1–3 Black and Hispanic patients receiving outpatient palliative care for cancer and other conditions reported more severe pain than White patients.^1,2 Another study found that at the first supportive care clinic consultation, Black and Hispanic patients reported worse pain than White patients, and Hispanic patients reported worse depression than both Black and White patients even after adjusting for stage of disease and comorbidities. ³

Most existing studies on this topic were limited by small sample sizes,^1,2 only included patients with cancer,^1,3 or are outdated.^1,2 We aim to add to existing knowledge by determining whether symptom severity differs between seriously ill White patients and patients of color in a large ethnically diverse cohort of patients receiving HomePal for a wide range of conditions. Furthermore, we aim to determine whether gender moderates racial and ethnic difference in symptom severity, as prior studies show that women tend to report more severe symptoms than men.^4–7

Methods

For this analysis, we used baseline data from a trial testing two models of HomePal for patients living with a serious illness in a large integrated health care system, Kaiser Permanente Southern California (KPSC). ⁸ Patients who were 18 years and older, had a serious illness with a prognosis of one to two years, were homebound, were English or Spanish speakers, and were admitted to HomePal were included in the analyses. The study was approved by the KPSC (No. 11633) institutional review board.

Symptom severity was measured with the total Edmonton Symptom Assessment System (ESAS) ⁹ score for each patient within 14 days of admission to HomePal. Research staff or HomePal clinicians administered the ESAS to either patients or proxy caregivers by phone or in-person in English or using a Spanish translation of the ESAS. Sociodemographics and clinical characteristics were obtained from the electronic health record system.

To assess for differences in ESAS scores at admission to HomePal, we performed univariable and multivariable median regression analyses across four race/ethnicity groups (Asian/Pacific Islanders, Black, Hispanic, and White); patients of other or unknown race/ethnicities were excluded due to the small sample (n = 14). The analyses were also stratified by gender. We included covariates in the multivariable analyses that, according to literature, were related to symptom severity: age, gender, insurance type, Charlson comorbidity score, ¹⁰ admitting diagnosis, impairment with activities of daily living, proxy response, and whether the ESAS was administered by research staff or clinicians. ¹¹

Results

A total of 2090 patients were included in the analyses. Patients of color were more likely to be younger, receive Medicaid, have cancer as their admitting diagnosis, have more functional impairment, and be more reliant on proxies to complete the ESAS than White patients (all, p < 0.05). Baseline total ESAS scores were lowest among Asian/Pacific Islanders and Black men (Table 1). These groups consistently had the lowest scores across all nine physical and mental symptoms (pain, tiredness, drowsiness, nausea, lack of appetite, shortness of breath, depression, anxiety, and well-being).

In multivariable analyses, total ESAS scores for Asian/Pacific Islander patients were lower than for White patients (−5 [−7.8, −2.2], p = 0.0005) (Table 2). Most of these differences were driven by the lower ESAS scores among Asian/Pacific Islander males than among White males (−6.4 [−10.3, −2.6], p = 0.001) with only marginal differences for Asian/Pacific Islander women compared with White women (−3.7 [−7.4, 0], p = 0.05). Black men similarly had lower total ESAS scores than White men (−5.4 [−8.7, −2.1], p = 0.001). There were no significant differences between Hispanics and White patients.

Discussion

In contrast to prior studies that found higher symptom severity in Black and Hispanic advanced cancer patients than White patients, we did not find such differences in this ethnically diverse cohort receiving HomePal within an integrated health care system after adjusting for several relevant sociodemographic and clinical characteristics. In fact, we found that Asian/Pacific Islander and Black men had lower symptom severity than White men; these differences in total ESAS scores (−6.4 to −5.4) meet or exceed published minimal clinically important difference threshold of ≥3 points. ¹²

Although race/ethnicity was used as an exposure variable in this study, we recognize that patients' interpretation and reporting of symptoms are inexplicably shaped by a complex set of cultural and societal norms.^13–15 Some studies suggest that Chinese Americans who value stoicism may be more likely to exhibit a high pain tolerance. ¹⁶ Interestingly, one study showed that, among an ethnically diverse sample of patients with cancer, Asian Americans consistently reported the lowest pain scores on several pain scales. ¹⁷ Furthermore, women receiving palliative care generally report more severe symptoms such as pain, nausea, and depression.^4–7

This may be a result of differences in gender norms, with men often being less willing to disclose pain or discomfort. ⁶ There is also some evidence that patient-reported symptoms are better documented in medical charts of men, meaning that women may have to report a higher severity for their symptoms to be documented and potentially treated. ⁶ Considering these findings, it may not be surprising that we observed the lowest ESAS scores at the intersection of male gender and Asian race though this does not fully explain the low scores for Black men.

Nonetheless, we acknowledge that the approach to palliative care and the available standardized assessment tools were designed primarily within the framework of White and Western philosophies, and thus we may not be asking the right questions to understand the true needs of many patients of color. ¹⁵ If low ESAS scores in people of color are more a reflection of the shortcoming of how symptom assessments are performed or what tools are used ¹⁸ versus how patients actually feel, this could have negative implications for effective symptom management, especially since changes in ESAS scores over time can influence a patient's treatment and care plans. ¹⁹

This would require care teams to be more vigilant in assessing for other indicators of poor symptom control. Future study should examine whether low ESAS symptom scores at admission to palliative care are associated with lower intensity of care and services and, potentially, worse end-of-life care experience and outcomes.

A strength of this study is our large sample size, which allowed for more novel and reliable estimates of symptom burden across race/ethnicity subgroups than what was available in the existing literature. Nonetheless, there are several limitations worth noting. Our cohort was made up of HomePal patients from one geographic region (Southern California) receiving care from an integrated health system that has a robust palliative care ecosystem, which may not generalize broadly. The ESAS only asks patients about their symptom severity in the present moment and was collected over a 14-day window of patients starting HomePal.

Thus, differences across patient groups might be driven by natural fluctuations in patient symptoms, as well as when they started to receive the home services. Owing to the exploratory nature of the study and number of analyses conducted, it is possible that the multiple comparisons generated significant findings by chance alone. Although we accounted for this in the adjusted models, there was variation in how the ESAS was collected that could contribute to differences across groups. For example, the literature shows that family proxies tend to underestimate measures of patient quality of life, ²⁰ which may translate into overestimation of symptom severity.

Furthermore, by whom and how the ESAS is collected may also influence patients and/or proxy responses. Some patients may under-report symptoms in the presence of family members as a way to “protect” them. ¹¹ The race/ethnicity and language concordance between the staff administering the ESAS and the patient or proxy may also influence responses. ²¹

Finally, since this was a secondary cross-sectional analysis of existing data, we did not have information on other important sociocultural measures such as the level of patient or caregiver acculturation, coping style, life experiences including adverse childhood events, discrimination, sexual orientation, and gender identity that could influence the experience and reporting of symptoms with serious illness.^22–25 Thus, it is important to acknowledge the diversity inherent in communities of color and the risk of bias and stereotyping based on such broad racial/ethnic groups that were constructed for this analysis.

Although we did not observe worse symptoms in Black and Hispanic patients compared with White patients in this study, there is still evidence that disparities in symptom severity exist elsewhere in palliative care^1–3 and in other health care settings. ²⁶ Our findings reinforce the importance of stratifying analyses of symptom severity by gender, as this study along with prior studies supports that the experience and reporting of symptoms differ between men and women.^4–7 Future studies should examine why disparities exist in certain health care systems and geographic regions but not in others.

As community and HomePal programs continue to grow to serve the increasingly diverse population of patients living with serious illness, we need to better understand the impact of culture and gender on the experience of pain, depression, and other common symptoms. ¹⁵ This will inform clinicians on how to best interpret patient-reported outcomes and ensure cultural humility with symptom assessment and management in alignment with patients' priorities and preferences.