Pain Burden in the CASiRe International Cohort of Sickle Cell Patients: United States and Ghana.

OBJECTIVES: Sickle Cell Disease (SCD) is a genetic blood disorder affecting over 1 million people globally. The aim of this analysis is to explore the pain burden of patients with SCD in two countries: the United States and Ghana. METHODS: The Consortium for the Advancement of Sickle Cell Research (CASiRe) was created to better understand the clinical severity of patients with SCD worldwide. Data regarding gender, SCD genotype, prior medical diagnoses, and validated pain burden measures were analyzed from the CASiRe database. The Sickle Cell Pain Burden Interview (SCPBI) was used to assess pain burden, the impact of pain on physical, emotional, and social function. RESULTS: Most subjects identified as Black/African American (n = 298, 97.0%). Patient ages ranged from 6 to 73 years. 35.9% resided in the United States, 64.1% resided in Ghana, 40.9% were men, and 58.7% were women. The mean SCPBI score for US SCD patients was 6.53(±5.89) vs 4.04(±5.10) for Ghanaian patients, P <0.001. Pain burden was higher in US men vs Ghanaian men (6.74(±5.68) vs 3.54(±4.46), P = .003) and in US women vs Ghanaian women (6.37 ± 6.06 vs 4.44(±5.54), P = .032). Pain burden was higher in US patients than Ghanaian patients for both the Hb SC/SBeta+ genotype (5.40(±5.29) vs 2.82(±4.86), P = .054) and Hb SS/SBeta0 genotype (6.79(±6.01) vs 4.49(±5.13), P = .003). Pain burden was significantly higher in SCD patients with comorbid conditions independent of geographic origin including stroke, cholecystectomy, gallstones, depression, and headache. DISCUSSION: US patients with SCD have a higher pain burden than Ghanaian patients. Further studies should investigate underlying contributors to pain burden in these populations and further explore the etiology of geographic differences in pain.

Age of first pain crisis and associated complications in the CASiRe international sickle cell disease cohort.

Pain is a hallmark of Sickle Cell Disease (SCD) affecting patients throughout their life; the first pain crisis may occur at any age and is often the first presentation of the disease. Universal newborn screening identifies children with SCD at birth, significantly improving morbidity and mortality. Without early screening, diagnosis is generally made after disease manifestations appear. The Consortium for the Advancement of Sickle Cell Research (CASiRe) is an international collaborative group evaluating the clinical severity of subjects with SCD using a validated questionnaire and medical chart review, standardized across 4 countries (United States, United Kingdom, Italy and Ghana). We investigated the age of first pain crisis in 555 sickle cell subjects, 344 adults and 211 children. Median age of the first crisis in the whole group was 4 years old, 5 years old among adults and 2 years old among children. Patients from the United States generally reported the first crisis earlier than Ghanaians. Experiencing the first pain crisis early in life correlated with the genotype and disease severity. Early recognition of the first pain crisis could be useful to guide counseling and management of the disease.

Preparing Medical Students for Anti-racism at the Bedside: Teaching Skills to Mitigate Racism and Bias in Clinical Encounters.

Introduction: Systemic racism perpetuates health disparities and negatively impacts health care delivery and patient outcomes. Racism and bias can affect every aspect of clinical care, including history-taking, physical examination, laboratory interpretation, note-writing, oral presentation, and decision-making. Medical students must learn racism- and bias-mitigation skills early in their professional development to provide high-quality, equitable care. Methods: In November 2021, senior medical students and faculty with expertise in promoting health equity and justice in medicine designed and cotaught a Zoom-based, 75-minute, interactive session for second-year medical students. Participants prepared by reading assigned articles. Breakout rooms were used to facilitate small-group discussions. Session topics included use of a structural vulnerability assessment tool, examples of how bias can impact the physical exam, demonstration of how language can transmit bias, and skill practice using neutral instead of stigmatizing language. Results: Forty second-year medical students participated in the session. Thirty-one students (78%) completed Likert-type surveys evaluating reaction and learning. Results showed improvements in students' perceptions of their abilities to assess for structural factors that influence health, recognize ways bias can impact clinical encounters, and apply skills to minimize bias in clinical care and decision-making. Discussion: Providing opportunities for health care learners to think critically about how bias impacts patients and communities and equipping them with tools to begin dismantling exclusionary, racist practices in medicine are achievable and crucial to actualizing a just and equitable health system. This educational session can be adapted for training across health care professions and the educational continuum.