Shawn M. Bediako

The Association of Provider Communication with Trust among Adults with Sickle Cell Disease

BackgroundAdults with sickle cell disease often report poor interpersonal healthcare experiences, including poor communication with providers. However, the effect of these experiences on patient trust is unknown.ObjectiveTo determine the association between patient ratings of the previous quality of provider communication and current trust in the medical profession among adults with sickle cell disease.Research designCross-sectional survey.ParticipantsA total of 95 adults with sickle cell disease.MeasurementsThe four-item Provider Communication Subscale from the Consumer Assessment of Healthcare Plans and Systems Survey; The five-item Wake Forest Trust in the Medical Profession Scale.Main resultsBetter ratings of previous provider communication were significantly associated with higher levels of trust toward the medical profession. A 10% increase in provider communication rating was associated with a 3.76% increase in trust scores (p < 0.001, 95% CI [1.76%, 5.76%]), adjusting for patient-level demographic, clinical, and attitudinal characteristics.ConclusionsPoorer patient ratings of provider communication are associated with lower trust toward the medical profession among adults with sickle cell disease. Future research should examine the impact of low trust in the medical profession on clinical outcomes in this population of patients.

Health care provider attitudes toward patients with acute vaso-occlusive crisis due to sickle cell disease: Development of a scale §

OBJECTIVE Patients with sickle cell disease (SCD) often perceive negative provider attitudes, which may affect the quality of patient-provider communication and care during vaso-occlusive crises (VOCs). This study investigated the validity and reliability of a scale to measure provider attitudes toward patients with acute VOC. METHODS Using a cohort of adults with VOC (September 2006 to June 2007), we administered a 10-item provider questionnaire within 72 h of patient encounters. After factor analysis, we created a 7-item Positive Provider Attitudes toward Sickle Cell Patients Scale (PASS); higher scores indicate more positive attitudes. We assessed internal consistency and evidence of construct validity, exploring bivariate relationships between provider or patient characteristics and the PASS score using multilevel modeling. RESULTS We collected 121 surveys from 84 health care providers for 47 patients. Patients averaged 30.3 years in age, and 60% were women. Among providers, 79% were nurses, and 70% worked in inpatient settings. PASS scores averaged 24.1 (S.D. 6.7), ranged 7-35, and had high internal consistency (Cronbachs alpha=0.91). As hypothesized, inpatient vs. emergency department providers (Delta=4.65, p<0.001) and nurses vs. other providers (Delta=0.95, p<0.001) had higher PASS scores. Higher patient educational attainment (Delta per year=2.74, p<0.001) and employment (Delta=5.62, p=0.001) were associated with higher PASS scores. More frequent hospitalizations (Delta per episode=-0.52, p<0.001) and prior disputes with staff (Delta=-7.53, p=0.002) were associated with lower PASS scores. CONCLUSION Our findings provide preliminary evidence for the reliability and construct validity of the PASS score in measuring provider attitudes toward patients with VOC. PRACTICE IMPLICATIONS Future studies should examine the validity of PASS in other cohorts of patients with SCD and their providers. With further evidence, PASS may prove useful for investigating the impact of provider attitudes on the quality of communication and care provided to these patients.

Hospital self‐discharge among adults with sickle‐cell disease (SCD): Associations with trust and interpersonal experiences with care

BACKGROUND Patient self-discharge from hospitals has been associated with a number of negative clinical outcomes. Research suggests that low patient trust and poor quality interpersonal experiences with care may be associated with hospital self-discharge. Although adults with sickle-cell disease (SCD) often report poorer quality healthcare experiences, research examining hospital self-discharge and its associations with both patient trust and quality of healthcare experiences is lacking for this patient population. OBJECTIVE To examine the association of interpersonal experiences with care and trust in the medical profession with hospital self-discharge history among patients with SCD. DESIGN Cross-sectional study. SETTING A large, urban academic medical center. PATIENTS Adults (age 18+ years) with SCD seeking outpatient or inpatient care. MEASUREMENTS We compared patient characteristics, patient perceptions of the quality of interpersonal experiences with care, and levels of trust between patients with and without a history of hospital self-discharge. RESULTS Adjusted analyses indicated that having a history of hospital self-discharge was associated with more negative interpersonal experiences and lower levels of trust. CONCLUSIONS Hospital self-discharge may be an important indicator of the quality of care received by adults with SCD. Further research is needed to better understand this phenomenon so that effective interventions can be designed to prevent its occurrence.

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

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 vs. race-based discrimination. Age and having difficulty persuading providers about pain were the only patient characteristics independently associated with race-based discrimination, whereas 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.

Race and social attitudes about sickle cell disease

Objective. Sickle cell disease is perhaps the most racialized condition in the history of modern medicine, yet very little research has focused on how racial perceptions influence social attitudes about the disease. Subsequently, the implications of these perceptions for public health prevention efforts and the provision of clinical care are not well known. Design. In this brief commentary, we posit that social cognitive and media framing theories provide useful approaches for assessing relations between race and social attitudes about sickle cell disease. Conclusion. Such inquiries might lead to more rigorous study of mechanisms that shape perceptions about sickle cell risk, interpersonal empathy toward patients, and public support for sickle cell-related policies.

Racial Centrality and Health Care Use Among African American Adults With Sickle Cell Disease

The present study examined an exploratory model of the confluence of racial centrality, pain, psychological variables, and health care use in a sample of African American adults with sickle cell disease. Significant path coefficients were observed between pain severity, perceived stress, and psychological symptoms. The model yielded direct effects for paths to health care use from pain frequency and racial centrality—indicating that participants who reported more frequent pain episodes tended to use more health care services and those who endorsed a highly central African American identity utilized fewer health care services. Generally, these findings suggest a need for expanded thinking about determinants of health care use in this population beyond psychological and physiological variables. These findings support a rationale for further exploring the sociocultural context of sickle cell and highlight a specific need for better understanding the complex relationships among multidimensional aspects of racial identity and health care use.

The Measure of Sickle Cell Stigma: Initial findings from the Improving Patient Outcomes through Respect and Trust study

Research about the influence of stigma on health outcomes in sickle cell disease is limited. We administered the recently developed Measure of Sickle Cell Stigma to 262 patients in the United States. The Measure of Sickle Cell Stigma yielded very good internal consistency and four interpretable factors. Significant associations among stigma, pain-related healthcare utilization, and perceived disease severity were observed for three of the four stigma factors (F range = 2.78–5.44). The Measure of Sickle Cell Stigma appears to be a useful tool for measuring disease-specific stigma among adults living with sickle cell disease, and further assessment of its clinical utility is warranted.

An unequal burden: Poor patient-provider communication and sickle cell disease

OBJECTIVE To assess disparities in the quality of healthcare provider communication experienced by African-American adults with and without sickle cell disease (SCD) in the U.S. METHODS Poor provider communication was assessed by the Provider Communication subscale of the Consumer Assessment of Healthcare Plans and Systems survey. The SCD sample was obtained from participants in a multicenter observational study of healthcare experiences. The national African-American sample data was obtained from published national estimates. RESULTS The SCD sample was more likely than the national sample to report poor communication in 3 out of 4 communication domains: listening (22.3% vs. 11.5%, p<0.0001); showing respect (26.1% vs. 9.5%, p<0.0001); and spending enough time (38.3% vs. 16.2%, p<0.0001). Differences were consistent in young, but not old, patients and showed some variation by self-reported health status and education. CONCLUSIONS The communication difficulties experienced by persons with SCD do not appear reducible to their predominantly African-American race, but may result from more disease-specific factors. PRACTICE IMPLICATIONS Healthcare providers should take particular care in recognizing and demonstrating recommended communication skills with SCD patients as these patients may be particularly vulnerable to, and cognizant of, poor quality interactions.

Multiple Levels of Suffering: Discrimination in Health-Care Settings is Associated With Enhanced Laboratory Pain Sensitivity in Sickle Cell Disease.

Objective:People living with sickle cell disease (SCD) experience severe episodic and chronic pain and frequently report poor interpersonal treatment within health-care settings. In this particularly relevant context, we examined the relationship between perceived discrimination and both clinical and laboratory pain. Methods:Seventy-one individuals with SCD provided self-reports of experiences with discrimination in health-care settings and clinical pain severity, and completed a psychophysical pain testing battery in the laboratory. Results:Discrimination in health-care settings was correlated with greater clinical pain severity and enhanced sensitivity to multiple laboratory-induced pain measures, as well as stress, depression, and sleep. After controlling for relevant covariates, discrimination remained a significant predictor of mechanical temporal summation (a marker of central pain facilitation), but not clinical pain severity or suprathreshold heat pain response. Furthermore, a significant interaction between experience with discrimination and clinical pain severity was associated with mechanical temporal summation; increased experience with discrimination was associated with an increased correlation between clinical pain severity and temporal summation of pain. Discussion:Perceived discrimination within health-care settings was associated with pain facilitation. These findings suggest that discrimination may be related to increased central sensitization among SCD patients, and more broadly that health-care social environments may interact with pain pathophysiology.

Predictors of Employment Status among African Americans with Sickle Cell Disease

Adults living with sickle cell disease (SCD) have extremely high rates of unemployment; however, very little is known about factors that contribute to their vocational outcomes. This study examined demographic, illness perception, and psychological variables as predictors of employment status among 115 adult respondents who completed a cross-sectional survey as part of the Cooperative Study of Sickle Cell Disease. Logistic regression analysis indicated that gender, assertiveness, and perceived impact of SCD were unique predictors of employment status. Women were 2.88 times more likely to be employed than men, and the odds of being employed increased by a factor of 2.47 for each one unit decrease in assertiveness. More favorable perceptions of SCD were also associated with a two-fold increase in employment. The results suggest that demographic and psychosocial factors may play a more important role in predicting employment outcomes in adults with SCD than previously recognized.