ABSTRACT
BACKGROUND: Data collection on race and ethnicity is critical in the assessment of racial disparities related to health. Studies comparing clinical and administrative data show discrepancies in race documentation and attribution. METHODS: Self-reported data from two studies were compared to demographics in the electronic health record (EHR) extracted from the Biomedical Translational Research Information System (BTRIS) repository. McNemar and Bhapkar analyses were conducted to quantify the agreement of ethnicity and race between self-reported and EHR data. Pearson's chi-square tests were used to explore the relationship between acculturation, length of time in the USA, country of residence, and how individuals self-reported their race. RESULTS: The sample (n = 280) was predominantly female (52.1 %), with a mean age of 47 (SD ± 13.74), mean years in the USA were 12.8 (SD ± 11.67) and the majority were born outside of the USA. (55.6 %). Those who self-identified as Hispanic (n = 208) scored a mean of 5.5 (SD ± 3.07) on the short acculturation scale (SAS) that ranges 4 to 20; lower scores indicate less acculturation. A significant difference was found between the way race is reported in the electronic medical record and self-reported data among those people who identified as Hispanic, with significant differences in the white (p < 0.0001) and other (p < 0.0001) categories. CONCLUSIONS: The misclassification of race is most frequent in those individuals who self-identified as Hispanic. As the Hispanic population in the USA continues to grow, understanding the factors that affect the way that individuals from this heterogeneous population self-report race may provide important guidance in tailoring care to address health disparities.
ABSTRACT
It has been argued that a country such as Liberia, not fully recovered from the devastation of decades of civil unrest, lacked the appropriate ethical and regulatory framework, basic human and health care services, and infrastructure to carry out clinical trials according to international standards of quality during a public health emergency. However, as Liberia, Sierra Leone, and Guinea were being ravaged by the largest and most devastating Ebola Virus Disease (EVD) outbreak ever recorded, the topic of conducting clinical trials of experimental vaccine and treatment candidates in these resource-poor countries generated the keen interest and concern of scientists, researchers, physicians, bioethicists, philanthropists, and even politicians. Decisive action on behalf of the Liberian government, and a timely positive and supportive response from the United States (U.S.) government, led to the formation of PREVAIL (Partnership for Research on Ebola Vaccines in Liberia) - a clinical research partnership between the two governments. Within a span of 12 weeks, this partnership accomplished the unimaginable: the successful initiation of a Phase II/III vaccine clinical trial for EVD in Liberia. This paper will discuss the dynamics of the research collaboration, barriers encountered, breakthroughs realized, key elements of success, and lessons learned in the process.
ABSTRACT
OBJECTIVE: The burden and psychological impact of providing care to a loved one with cancer is significant and associated with a number of problems including sleep disturbance and fatigue. While engaging in healthy behaviors such as proper nutrition, exercise, and stress reduction may improve sleep and fatigue, few studies have focused on this relationship. The objective of this study is to examine the relationship of health behaviors with sleep quality and fatigue in transplant caregivers. METHODS: Data were analyzed from a cross-sectional survey of 78 caregivers of patients undergoing allogeneic hematopoietic stem cell transplantation. Measures included: Health-Promoting Lifestyle Profile II (HPLP-II), Brief Symptom Inventory (Distress), Caregiver Reaction Assessment (Caregiver Burden), Pittsburgh Sleep Quality Index, and the Multidimensional Fatigue Symptom Inventory Short-Form. RESULTS: Controlling for age, gender, BMI, burden and distress, health behaviors predicted sleep quality (B = -0.408, p = 0.021) and fatigue (B = -0.966, p < 0.001). Stress management (B = -0.450, p = 0.001), nutrition (B = -0.249, p = 0.048), and interpersonal relationships (B = -0.319, p = 0.049) were the HPLP-II subscales that significantly predicted sleep quality; nearly every HPLP-II subscale predicted fatigue. CONCLUSIONS: Despite the burden and distress associated with caregiving, engaging in healthy behaviors may help to improve sleep and fatigue in transplant caregivers. Published 2015. This article is a U.S. Government work and is in the public domain in the USA.
