Abstract
Background & Purpose: The purpose of this review is to examine instruments that measure providers' perceptions of adult patients with Sickle Cell Disease (SCD), examine instruments that measure adult patients with SCD perceptions of providers' behaviors, and determine optimal instruments to use in evaluating the perceptions of Emergency Department (ED) providers and adult patients with SCD of one another's behaviors after an interaction in the ED. Methods: An integrative review was conducted searching EBSCOhost and PubMed databases using the keywords: measure [OR] measure* [OR] assess* [OR] scale [OR] survey [OR] tool [AND] stigma* [OR] stereotype [OR] prejudice [OR] bias [OR] perception [OR] attitude [OR] discrimination [OR] racism [OR] behavior [AND] interaction [OR] relationship [OR] communication [AND] sickle cell. Initial search located 256 articles, but only 15 articles were included in the final review. Results: Fifteen articles reporting six instruments were reviewed. Four instruments evaluated a provider’s perceptions of patients with SCD behaviors, and two instruments evaluated how patients with SCD perceived provider behaviors. The two patient-focused instruments and three provider-focused instruments were found to be adequately reliable and valid according to the Psychometric Grading Framework (PGF). Conclusions: The findings suggest that the General Perceptions About Sickle Cell Disease Patients Scale would be an optimal instrument to evaluate ED providers' perceptions of adult patients with SCD behaviors. One patient-focused instrument, The Sickle Cell Health-Related Stigma Scale (SCD-HRSS), reported adequate reliability and validity but was not specific to measuring the patient's perceptions of ED providers' behaviors, nor was it administered in the ED environment. The SCD-HRSS Doctors subscale has potential adaptability for use in measuring patients with SCD perceptions of ED provider behaviors in the ED environment.
Highlights
Sickle Cell Disease (SCD) is the most common inherited blood disorder in the United States [1]
Many patients with SCD have disease-related symptoms treated at pediatric comprehensive sickle cell clinics [2]
Patients with SCD can experience intermittent acute pain from an acute Vaso-Occlusive Crisis (VOC), which is the hallmark symptom of SCD, leading to an Emergency Department (ED) visit [10, 16, 17]
Summary
Sickle Cell Disease (SCD) is the most common inherited blood disorder in the United States [1]. Many patients with SCD have disease-related symptoms treated at pediatric comprehensive sickle cell clinics [2]. Once patients with SCD reach adulthood, they transit out of comprehensive sickle cell clinics into mainstream medical. Treatment for an acute VOC includes evidence-based pain management with a combination of nonsteroidal antiinflammatory medications and short- and long-acting opioids used in-home therapies [19]. The average wait time to initial analgesic administration is 80 minutes from the time of triage [23]. This long wait time for care has been associated with race [21]; over 90% of individuals with SCD in the United States are African American [24].
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