Browsing by Author "Royal, Charmaine"

Background. Race-based medicine assumes that genetic or biological differences account for the observed health differences among races. Race-based medicine has been shown to result in poor patient outcomes. Nevertheless, this practice continues due to a lack of clarity about the role of race in clinical medicine and research. This study aims to describe the use of race in medicine among physicians and medical students.Methods. This study employed a mixed methods design consisting of 1) a quantitative online survey, and 2) qualitative semi-structured interviews. The study population were medical students, residents, fellows and clinical faculty (M.D, D.O, Ph.D) from a large academic medical center in the southern U.S. A novel survey instrument was developed for this study, to cover the key domains we studied. Results. Of the 1,372 total survey responses, the final sample consisted of 1,016 completed responses (536 faculty, 267 trainees, and 213 students). 91.5% of students, 84.3% of trainees, and 83% of faculty believe the best measure of race is self-report. Students were less likely to use race as a proxy for these variables compared to faculty and trainees. Conclusions. In this exploratory study we found that there are significant differences between students, and faculty/trainees in the use of race in medicine.

Introduction: Sickle cell disease (SCD) is a genetically inherited recessive blood disorder that affects millions of people worldwide. The management of SCD should and can be considered a collaborative team effort, and requires the comprehensive and coordinated support of several medical professionals. The rising number of adults living with SCD creates a need for long term therapeutic and management strategies as well as a better understanding of the transition from pediatric to adult care. The research goal for this project is to compare the two systems that exist for treatment of adolescents with SCD in Jamaica and the United States by assessing differences and similarities in patients’ readiness for adult treatment and their understanding of SCD and its management. Methods: This study was conducted in the Sickle Cell Unit at the University of West Indies (UWI) hospital in Kingston, Jamaica. Eligibility for this study was defined as patients with SCD, between the ages of 13-19, seeking treatment at the health facility in the University of the West Indies, who have no acute illness at the time of study. After a verbal and written consent process during check-in, each participant completed a demographic survey, disease knowledge questionnaire, the ASH Transition Readiness Assessment Questionnaire, and had the opportunity to participate in in-depth interviews. Following data collection, results subsequently with similar previously completed surveys from patients at the Duke University Sickle Cell Center. Results: Gender and socioeconomic factors were not associated with differences in assessment scores in Jamaica. Total scores for disease knowledge questionnaires increased with age, however mean scores for the 17-19 age group were 62.17% lower than Duke University patients of the same age. Self-evaluation with the ASH Transition Readiness Assessment also showed an increase in scores with age, and significant increases in disease knowledge and appointments sections in both the 13-14 and 17-19 age groups, estimated by a p-value of 0.023 and 0.006, respectively. The results, however, were also generally lower than similar Transition Readiness Assessment measures at Duke. In-depth interviews revealed patient insight into disease knowledge, treatment involvement and experiences with doctors, family, and in the clinic. Answers align with both questionnaires used in this study.

Background: Sickle cell disease (SCD) is the most common genetic disorder of the blood. Jamaica has the highest recorded SCD prevalence in the Caribbean (0.65%). SCD treatment options are limited though new genetics research technologies such as gene editing and gene therapy show great promise as SCD cures. An ethical framework based on social and cultural contexts must inform the conduct of genetics research and the introduction of these technologies to the Jamaican SCD population. Methods: This qualitative cross-sectional study used semi-structured in-depth interviews to investigate perspectives on genetics research and cures for SCD and the social, cultural and ethical factors related to these perspectives among 10 SCD healthcare providers, 10 SCD patients and 9 parents affiliated with the Sickle Cell Unit (SCU) in Kingston Jamaica. Results: Though they expressed some skepticism, participants were optimistic about genetics research. They believed it would lead to improved SCD treatment and advance SCD knowledge. Attitudes towards genetics research also pointed to potential ethical issues regarding autonomy, confidentiality and benefit sharing. Participants also viewed SCD cures positively, though 4 patients revealed they had no interest in receiving a SCD cure. Participants also described a number of social and cultural factors such as socioeconomic issues, stigma and information seeking behavior that contextualized these perspectives. Conclusions: We propose a framework that integrates these perspectives, and the social and cultural contexts to guide SCD genetics research and the introduction of gene-based SCD cures in Jamaica. Researchers in genetics must work closely with the SCU to ensure that participants fully understand study aims and methods, and develop benefit-sharing models that will ensure that participants and the wider Jamaican SCD community benefit from research to which they contribute. As SCD gene-based technologies become more readily available in Jamaica in the long term, the local health system must prioritize related professional and public education and programming, as well as social and counselling services to adequately prepare patients and parents to receive these technologies.

Background: Sickle cell disease (SCD) is a debilitating genetic blood disorder that seriously impacts the quality of life of affected individuals and their families. With 85% of cases occurring in sub-Saharan Africa, it is essential to identify the barriers and facilitators of optimal outcomes for people with SCD in this setting. This study focuses on understanding the relationship between support systems and disease outcomes for SCD patients and their families in Cameroon and South Africa.

Methods: This mixed-methods study utilizes surveys and semi-structured interviews to assess the experiences of 29 SCD patients and 28 caregivers of people with SCD across three cities in two African countries: Cape Town, South Africa; Yaoundé, Cameroon; and Limbe, Cameroon.

Results: Patients in Cameroon had less treatment options, a higher frequency of pain crises, and a higher incidence of malaria than patients in South Africa. Social support networks in Cameroon consisted of both family and friends and provided emotional, financial, and physical assistance during pain crises and hospital admissions. In South Africa, patients relied on a strong medical support system and social support primarily from close family members; they were also diagnosed later in life than those in Cameroon.

Conclusions: The strength of medical support systems influences the reliance of SCD patients and their caregivers on social support systems. In Cameroon the health care system does not adequately address all factors of SCD treatment and social networks of family and friends are used to complement the care received. In South Africa, strong medical and social support systems positively affect SCD disease burden for patients and their caregivers. SCD awareness campaigns are necessary to reduce the incidence of SCD and create stronger social support networks through increased community understanding and decreased stigma.