Does Race Influence the Provision of Care to Persons With Sickle Cell Disease?: Perceptions of Multidisciplinary Providers

Telfair, Joseph; Myers, Jennifer; Drezner, Sherree

doi:10.1353/hpu.2010.0127

Cited by 29 publications

(21 citation statements)

References 20 publications

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“…25, 26 Furthermore, studies of SCD patients and health care providers have found that race is often thought by members of both groups to impact the quality of the care delivered to SCD patients. 27, 28 Therefore, it is not surprising that patients with SCD might perceive a higher level of race-based discrimination from health care providers than other groups of African American patients, as was found here.…”

Section: Discussionsupporting

confidence: 64%

Perceived Discrimination in Health Care Is Associated With a Greater Burden of Pain in Sickle Cell Disease

Haywood¹,

Diener‐West

Strouse³

et al. 2014

Journal of Pain and Symptom Management

101

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Context Perceived discriminatory experiences in society have been associated with a higher burden of pain among some minority patient populations. Objectives To describe the extent to which patients with sickle cell disease (SCD) perceive discrimination from health care providers, and to examine the association of these experiences with the burden of chronic SCD pain. Methods Cross-sectional analysis of data collected at baseline of a prospective cohort study of SCD patient experiences of care (n = 291). Perceived race-based and disease-based discrimination from health care providers were measured using subscales adapted from the Interpersonal Processes of Care Survey. Discrimination scores were examined for their association with patient characteristics and measures of pain burden using descriptive, bivariate, and multivariate analytic techniques. Results Respondents reported a greater burden of race-based discrimination from health care providers than has been previously reported by African Americans, and they reported a greater amount of disease-based versus race-based discrimination. While age and having difficulty persuading providers about pain were the only patient characteristics independently associated with race-based discrimination, older age, greater emergency room utilization, having difficulty persuading providers about pain, daily chronic pain, fewer “good days” during a week, and a higher severity of pain on their “good days” were independently associated with greater disease-based discrimination. Conclusion Perceived disease-based, but not race-based, discrimination was found to be associated with a greater range of self-reported pain among patients with SCD. If causal, this finding could signal an important new approach to mitigating the burden of pain experienced by persons with SCD.

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Section: Discussionsupporting

confidence: 64%

Perceived Discrimination in Health Care Is Associated With a Greater Burden of Pain in Sickle Cell Disease

Haywood¹,

Diener‐West

Strouse³

et al. 2014

Journal of Pain and Symptom Management

101

View full text Add to dashboard Cite

show abstract

“…This finding supports previous work by Telfair et al, who found that African-American healthcare providers were more likely than providers of other races to believe that race plays a role in the delivery of quality care to SCD patients. 31 Together, these findings suggest a role in the promotion of cultural competency training programs for healthcare providers, as well as initiatives to increase the number of underrepresented minorities in medical fields, as ways to improve the quality of care delivered to SCD patients.…”

Section: Discussionmentioning

confidence: 95%

Emergency Provider Analgesic Practices and Attitudes Toward Patients With Sickle Cell Disease

Glassberg¹,

Tanabe²,

Chow³

et al. 2013

Annals of Emergency Medicine

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Study Hypothesis Demographic factors and emergency provider attitudes are associated with adherence to national guidelines for the management of acute SCD pain. Methods We conducted a cross sectional survey of emergency providers at the 2011 annual American College of Emergency Physicians scientific assembly using a validated instrument to assess provider attitudes and self-reported analgesic practices towards patients with SCD. Multivariable, relative risk regressions were used to identify factors associated with adherence to guidelines. Results There were 722 eligible participants with a 93% complete response rate. Most providers self-reported adherence to the cornerstones of SCD pain management including parenteral opioids (90%) and re-dosing opioids within 30 minutes if analgesia is inadequate (85%). Self-reported adherence was lower for other recommendations including use of patient-controlled analgesia (PCA), acetaminophen, NSAIDs and hypotonic fluids when euvolemic. Emergency providers in the highest quartile of negative attitudes were 20% less likely to re-dose opioids within 30 minutes for inadequate analgesia (risk ratio 0.8, 95% CI 0.7 – 0.9). High volume providers (those who see more than one SCD patient per week), were less likely to re-dose opioids within 30 minutes for inadequate analgesia (RR 0.9, 95% CI 0.8 – 0.9). Pediatric providers were 6.6 times more likely to use PCA for analgesia (95%CI 2.6 – 16.6). Conclusions The majority of emergency providers report that they adhere to national guidelines regarding use of opioids for SCD-related acute pain episodes. Other recommendations have less penetration. Negative attitudes towards individuals with SCD are associated with lower adherence to guidelines.

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“…74 In one study, African American providers, female providers, and providers who served adults were more likely to agree that race issues influence quality of care for individuals with SCD. 97 More frequent hospitalizations and prior disputes with staff were associated with providers’ negative attitudes in another study. 98 A systematic review found a high level of evidence that negative provider attitudes (and a moderate level of evidence that lack of provider knowledge) pose significant barriers to effective pain management in SCD.…”

Section: Methodsmentioning

confidence: 93%

Adult Sickle Cell Quality-of-Life Measurement Information System (ASCQ-Me)

Treadwell¹,

Hassell²,

Levine

et al. 2014

The Clinical Journal of Pain

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Objectives Research-derived evidence about the impact of sickle cell disease (SCD) on the lives of affected adults is lacking. We conducted formative research to provide the basis for a comprehensive description of how SCD affects the lives of adults, with the goal of developing a SCD-specific quality-of-life measurement system. Methods We conducted a comprehensive literature review of patient-reported outcomes, followed by a series of focus groups and structured individual interviews with adults with SCD (n = 122) and their health care providers (n = 15). Results We reviewed 473 abstracts and included 86 articles in the final review. The literature revealed broad categories of the impact of SCD and its treatment on the lives of adults—pain; emotional distress; social-role functioning; overall quality-of-life; and quality of care. We classified 1213 incidents from the focus groups and interviews into a taxonomy (16 domains) that met the criterion for saturation and was demonstrated to be reliable for the classification of incidents. The final conceptual model was built upon the taxonomy. Discussion Our conceptual model was similar to previous models with the effects of pain predominating, interwoven with emotional distress, quality of care, and stigmatization. We found a broad range of emotions reflected, including positive effects of SCD. Items for the quality-of-life measure were derived from the taxonomy and the conceptual model may be of use in generating hypotheses for clinical research and improving understanding for clinicians of the lived experience of adults with SCD.

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Does Race Influence the Provision of Care to Persons With Sickle Cell Disease?: Perceptions of Multidisciplinary Providers

Cited by 29 publications

References 20 publications

Perceived Discrimination in Health Care Is Associated With a Greater Burden of Pain in Sickle Cell Disease

Perceived Discrimination in Health Care Is Associated With a Greater Burden of Pain in Sickle Cell Disease

Emergency Provider Analgesic Practices and Attitudes Toward Patients With Sickle Cell Disease

Adult Sickle Cell Quality-of-Life Measurement Information System (ASCQ-Me)

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