Ethnic Health Inequalities

The associated disparity of being black and poor is apparent in data from retrospective cohort studies of SCD children. An analysis of one Medicaid-insured Maryland SCD program (Bundy DG, Muschelli J, Clemens GD, et al. Ambulatory care connections of Medicaid-insured children with sickle cell disease. Pediatr Blood Cancer 2012;59:888–894) carried out between 2002 and 2008, revealed a failure rate of 38% of children not being seen by a hematologist by age 2, and likewise, 54% of those aged 12 to 17 who did not have a visit with a hematologist in the preceding two years.

Attending a dedicated infusion clinic for acute crises in SCD adults improved dissatisfaction with quality of pain management compared with general ambulatory settings (Lanzkron S, Carroll CP, Hill P, et al. Impact of a dedicated infusion clinic for acute management of adults with sickle cell pain crisis. American Journal of Hematology 2015; 90:376-380). This is consistent with the experience of most SCD patients, who often cite lack of enough decision making in their care. They also express concerns about poor pain management, shortage of ambulatory care services, poor communication with healthcare providers, and inadequate follow-up care (Raphael JL, Oyeku SO. Sickle cell disease pain management and the medical home. Hematology Am Soc Hematology Educ Program 2013;2013:433-438).

Health-related Quality of Life (HRQoL), which refers to the way an illness affects a person’s ability to live pain-free and interact with family, is expressed as a number between 0 and 1. Individuals in perfect health rate themselves 1, while those with disabling chronic disease equate to a fraction thereof. Quality Adjusted Life Years (QALY) expresses the proportion of time lived in perfect health and is calculated by multiplying HRQoL by the number of years in question. Self-reported overall QALY is diminished in SCD due to chronic pain and addiction (Asnani M, Barton-Gooden A, Grindley M, et al. Utility of paediatric quality of life and revised illness perception questionnaires in adolescents with sickle cell disease. Vulnerable Children and Youth Studies 2016; 11:1-12). The trend of declining QALY begins in childhood, with affected black children comparing themselves unfavorably to healthier white and non-white individuals in terms of body pain, physical functioning, behavior, general health, and self-esteem (Dale JC, Cochran CJ, Roy L, et al. Health-related quality of life in children and adolescents with sickle cell disease. J Pediatr Health Care 2011; 25:208-215). Citing mean scores for HRQoL in the range comparable to treated cancer and rheumatoid arthritis illustrates how severe their illness is perceived. This led the American Academy of Pediatrics to recommend comprehensive care for affected children with SCD, including psychosocial assessment, to optimize their adaptation to chronic illness. This includes improving provider and patient understanding of personal and cultural beliefs about the illness, potential stressors and available coping and support systems (American Academy of Pediatrics, Section on Hematology/Oncology, Committee on Genetics. Health supervision for children with sickle cell disease. Pediatrics. 2002; 109:526–535). One longitudinal epidemiologic study, Pain in Sickle Cell Epidemiology Studies (PiSCES) found that adults self-reported pain in 54% of days surveyed (McClish DK, Smith WR, Levenson JL, et al. Comorbidity, Pain, Utilization, and Psychosocial Outcomes in Older versus Younger Sickle Cell Adults: The PiSCES Project. Biomed Res Int. 2017;2017:4070547), making daily pain a constant worry among SCD patients, and contributing to their concern for adequate opioid analgesic access during and between crises.

Ratanawongsa and colleagues (Ratanawongsa N, Haywood C, Bediako SM, et al. Health care provider attitudes toward patients with acute vaso-occlusive crisis due to sickle cell disease: development of a scale. Patient Educ Couns 2009; 76:272-278) assessed the validity and reliability of the Positive Provider Attitudes toward SCD Patients Scale (PASS), which measures provider attitudes towards SCD patients in acute crisis. High SCD severity was associated with lower PASS scores, consistent with the misconception that the disease severity was related to inappropriate hospital services utilization. Lower PASS scores were associated with less specialized ED providers. The reduced PASS scores by ED providers, compared to inpatient providers including hematologists, suggest that differences in medical training, as well as a lack of patient continuity, which may be absent in the ED personnel, impacts the providers who encounter SCD at entry to hospitals.

Implicit in the attitude formation between healthcare providers and patients is the establishment of mutual trust and respect (Beach MC, et al., “What does ‘respect’ mean? Exploring the moral obligations of health professionals to respect patients”, Journal of General Internal Medicine, 2007; 22:692–695). Physicians owe patients respect, independent of a patient’s illness or perceived personal characteristics. Patients quickly sense whether and how much respect their physicians have for them by the amount and quality of information they offer, and by the way they are treated (Beach MC, et al., “Are physicians’ attitudes of respect accurately perceived by patients and associated with more positive communication behaviors?”, Patient Education and Counseling, 2006; 62:347–354).

Self-reports from SCD patients suggest that the breakdown of patient-provider trust forms the basis for analyzing problematic pain management in SCD, according to Elander and colleagues (Elander J, et al. Pain management and symptoms of substance dependence among patients with sickle cell disease. Social Science and Medicine. 2003; 57:1683–1696). Pain-related symptoms were reported in 88% of those studied (Elander J, et al. Pain management and symptoms of substance dependence among patients with sickle cell disease. Social Science and Medicine. 2003; 57:1683–1696). Of the sampled SCD patients, 31% met the Diagnostic and Statistical Manual of Mental Disorders-Text Revised (DSM-IV-TR) (American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders: DSM-IV-TR. Washington, DC: American Psychiatric Association.) criteria for substance dependence, compared with only 2% of those citing non-pain-related symptoms. Disrespectful provider behaviors, encountered among minority ethnic patients across a variety of medical disorders, not only contribute to inequalities in care and health outcomes (Van Ryn M, Burke J. The effect of patient race and socio-economic status on physicians’ perceptions of patients. Social Science and Medicine. 2000; 50:813–828), but also encourage poorer pain management across a range of different treatment settings, including the hospital ED (Green CR, et al. The unequal burden of pain: confronting racial and ethnic disparities in pain. Pain Medicine 2003; 4:277–294; Todd KH, Samaroo N, Hoffman JR. Ethnicity as a risk factor for inadequate emergency department analgesia. Journal of the American Medical Association. 1993; 269:1537–1539). Among 227 multidisciplinary healthcare providers who participated in an inventory of items scored to judge the contribution of race on the provision of care to SCD patients, African American healthcare providers were more likely to perceive race as influencing all scale items, compared to Caucasian and other racial healthcare providers (Telfair J, Myers J, Drezner S. Does race influence the provision of care to persons with sickle cell disease? Perceptions of multidisciplinary providers. J Health Care Poor Underserved 1998; 9:184–195). Ethnicity is the strongest predictor of adequate ED analgesic administration, with an odds ratio (OR) of 7.46 when comparing Hispanic to non-Hispanic whites with long-bone fractures at one major academic medical center, after controlling for potentially confounding covariates through multiple logistic regression (Todd KH, Samaroo N, Hoffman JR. Ethnicity as a risk factor for inadequate emergency department analgesia. Journal of the American Medical Association. 1993; 269:1537–1539). Despite recurrent unpredictable, localized or generalized pain being the leading cause for ED visits and hospitalizations, SCD pain remains largely undertreated (Green CR, et al. The unequal burden of pain: confronting racial and ethnic disparities in pain. Pain Medicine 2003; 4:277–294). This is believed to be in part due to disparities in analgesic administration by healthcare providers.

The Model of Concern-Raising Behaviors in Sickle Cell Disease

In a series of papers between 2004 and 2011, Erlander and coworkers (Elander J, et al. “Understanding the Causes of Problematic Pain Management in Sickle Cell Disease: Evidence That Pseudoaddiction Plays a More Important Role Than Genuine Analgesic Dependence.” Journal of Pain and Symptom Management. 2004; 27:156-169; Elander J, Beach MC, Haywood C. “Respect, Trust, and the Management of Sickle Cell Disease Pain in Hospital: Comparative Analysis of Concern-Raising behaviors, Preliminary Model, and Agenda for International Collaborative Research to Inform Practice.” Ethn Health. 2011;16:405-421) defined five in-hospital concern-raising behaviors: staff-patient disputes about analgesic drug requirements, accusation or suspicion of analgesic drug misuse, use of analgesics for other than prescribed purposes, tampering with analgesic drug delivery systems, and self-discharges or abrupt departures from the hospital.

Data were collected in two inner-city treatment cohorts representing London and Baltimore, to provide theoretical insight into the contextual factors contributing to concern-raising behavior. With a prevalence ratio of 1.59 and an admission ratio of 2.53, albeit with a similar degree of SCD severity, Baltimore patients appear to seek hospital treatment when they are unable to manage at home. However, three concern-raising behaviors emerged, respectively between the Baltimore and London cohorts, in regards to disputes with staff (66% versus 39%), tampering with analgesic delivery systems (32% versus 4%), and self-discharge from the hospital (49% versus 4%). Although African-Americans in Baltimore and African and Caribbean cases are minorities in both cities, African-Americans comprise 13% of the total population compared to 2% for African and Caribbean cases. The higher ethnic density in Baltimore cases could influence perceptions of care quality and affect how SCD patients respond to treatment, making them perceive a lack of respect, accordingly. According to Saha and colleagues (Saha S, et al. “Patient-Physician Racial Concordance and the Perceived Quality and Use of Health Care.” Archives of Internal Medicine. 1999;10 (159):997-1004), racial and cultural factors are significant in patient-physician relationships. Improving the cultural competence of physicians who care for racial and ethnic minority groups—who, in general, may be less satisfied with the care received by the majority of white populations—applies equally to SCD. Apart from ethnicity, the study considers the intensity of pain-related emotional distress that is characteristic of SCD. Moreover, SCD patients in Baltimore, who appear to be at risk of disrespectful and mistrustful care by their providers, are in need of the most sympathetic care. Helping providers to avoid treatment biases towards emotionally distressed SCD patients in pain, who are not necessarily opioid analgesic drug-dependent, is a worthwhile target for behavioral interventions.

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