Sickle cell disease (SCD) is one of the most common inherited diseases in the United States. Vasocclusion, resulting in acute, debilitating pain, is the hallmark of SCD and the most common reason for hospitalization beyond infancy. In part due to SCD patients'need for narcotic medications during painful crises, and providers'reluctance to prescribe them, patients are often viewed as drug addicts and have adversarial relationships lacking in trust and respect with health professionals. Adversarial relationships may be magnified perhaps because SCD patients are typically racial/ethnic minorities;trust and respect have been shown to occur less in minority patient-physician interactions. A better understanding is needed of the complex behavioral and attitudinal forces present in interactions between SCD patients and their providers and their effect on patient outcomes.
Our aims are 1) to evaluate the experiences of respect, trust, communication, adherence to therapy, appropriateness of care, and health outcomes for SCD patients in routine care environments, and 2) to evaluate the acute care experiences of respect, pain management quality, and health outcomes for SCD patients with painful crisis in the Emergency Department and inpatient setting. We will conduct a prospective cohort study of 350 SCD patients. Patients will be eligible if they are age 16 or older, have a sickle hemoglobinopathy and are willing to give informed consent. We will measure experience of respect, trust, clinical characteristics, pain related attitudes and behaviors, social and behavioral characteristics, patient- provider communication, patient adherence, appropriateness of care and patient outcomes. We will also study more intensively the experience of SCD patients with painful crises (and a control group of asthma patients) who visit the Emergency Department or are hospitalized, also measuring respect experienced by patients, quality of their care (including pain management for SCD), pain resolution and health care utilization. By establishing the fundamental relations between patient experience of respect, trust, healthcare processes, and patient outcomes we hope to generate important information regarding targets for interventions to reduce morbidity and improve the health status of vulnerable SCD patients. On a wider scale, the research may provide insight into how behavioral factors, in conjunction with pathophysiology and medical advances, impact health for other chronic diseases affecting ethnic and racial minorities. Sickle cell disease--characterized by unpredictable episodes of debilitating pain and shortened life expectancy--is one of the most common inherited diseases in the United States and primarily affects African Americans. Because patients with sickle cell disease have reported treatment with disrespect and poor quality healthcare, our study aims systematically to assess SCD patients'experiences of respect, their trust in healthcare providers and the health system, the quality of healthcare they receive, and their overall health outcomes in both routine and acute care settings.
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