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.
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.
Early interventions addressing disparities in academic performance, especially for those children most at risk, may lead to improved long-term health outcomes in this population.
Background
A substantial number of planned clinical trials for sickle cell disease (SCD) have terminated early due to insufficient patient enrollment.
Purpose
To describe attitudes towards clinical trials among a sample of adults with SCD and identify patient-level factors associated with these attitudes.
Methods
Our data came from a sample [N = 291] of primarily adults with SCD participating in the Improving Patient Outcomes with Respect and Trust (IMPORT) study, which is a federally-funded observational study of SCD patient experiences in seeking health care. Attitudes towards clinical trials were assessed using items from the Perceptions of Participation in Clinical Research instrument. Patient factors examined as potential correlates of clinical trial attitudes were demographics, disease severity, engagement in self-care, trust, healthcare experience ratings, and prior history of participation in clinical trials. Multiple regression analyses were used to identify patient-level correlates of clinical trial attitudes.
Results
Our sample of SCD patients expressed overwhelmingly favorable attitudes about clinical trials, with 77% to 92% of our sample expressing agreement with a series of positive statements about clinical trials in general. Demographics, engagement in self-care, healthcare experience ratings, and prior trial participation each explained significant portions of the variability in clinical trial attitudes.
Limitations
The generalizability of our results to the entire SCD population may be of concern as the study participants were all receiving care at comprehensive sickle cell centers and already participating in clinical research.
Conclusions
Our results suggest that, in principle, adults with SCD enrolled in an observational study express very positive general attitudes about clinical trial participation and that specific factors attached to particular clinical trial opportunities may play a greater role in a SCD patient’s decision to participate than a general unwillingness to participate.
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