Clinical Outcomes Associated With Sickle Cell Trait: A Systematic Review.

Background: Although sickle cell trait (SCT) is largely a benign carrier state, it may increase risk for certain clinical outcomes. Purpose: To evaluate associations between SCT and clinical outcomes in children and adults. Data Sources: English-language searches of PubMed, CINAHL, the Cochrane Library, Current Contents Connect, Scopus, and Embase (1 January 1970 to 30 June 2018) and bibliographies of review articles. Study Selection: Observational controlled studies (published in English) in children or adults that examined an association between SCT and any of 24 clinical outcomes specified a priori in the following 6 categories: exertion-related injury; renal, vascular, pediatric, and surgery- or trauma-related outcomes; and overall mortality. Data Extraction: A single reviewer extracted study data, which was checked by another; 2 reviewers independently assessed study quality; and strength of evidence was assessed by consensus. Data Synthesis: Of 7083 screened studies, 41 met inclusion criteria. High-strength evidence supported a positive association between SCT and risk for pulmonary embolism, proteinuria, and chronic kidney disease. Moderate-strength evidence supported a positive association between SCT and exertional rhabdomyolysis and a null association between SCT and deep venous thrombosis, heart failure or cardiomyopathy, stroke, and pediatric height or weight. Absolute risks for thromboembolism and rhabdomyolysis were small. For the remaining 15 clinical outcomes, data were insufficient or strength of evidence was low. Limitation: Publication bias was possible, and high-quality evidence was scant. Conclusion: Sickle cell trait is a risk factor for a few adverse health outcomes, such as pulmonary embolism, kidney disease, and exertional rhabdomyolysis, but does not seem to be associated with such complications as heart failure and stroke. Insufficient data or low-strength evidence exists for most speculated complications of SCT. Primary Funding Source: National Human Genome Research Institute.

Primary Care Physicians' Collection, Comfort, and Use of Race and Ethnicity in Clinical Practice in the United States.

PURPOSE: The clinical utility of race and ethnicity has been debated. It is important to understand if and how race and ethnicity are communicated and collected in clinical settings. We investigated physicians' self-reported methods of collecting a patient's race and ethnicity in the clinical encounter, their comfort with collecting race and ethnicity, and associations with use of race in clinical decision-making. METHODS: A national cross-sectional study of 787 clinically active general internists in the United States. Physicians' self-reported comfort with collecting patient race and ethnicity, their collection practices, and use of race in clinical care were assessed. Bivariate and multivariable regression analyses were conducted to examine associations between comfort, collection practices, and use of race. RESULTS: Most physicians asked patients to self-report their race or ethnicity (26.5%) on an intake form or collected this information directly from patients (26.2%). Most physicians were comfortable collecting patient race and ethnicity (84.3%). Physicians who were more comfortable collecting patient race and ethnicity (ß= 1.65; [95% confidence interval; CI 0.03-3.28]) or who directly collected patients' race and ethnicity (ß= 1.24 [95% CI 0.07-2.41]) were more likely to use race in clinical decision-making than physicians who were uncomfortable. CONCLUSIONS: This study documents variation in physician comfort level and practice patterns regarding patient race and ethnicity data collection. As the U.S. population becomes more diverse, future work should examine how physicians speak about race and ethnicity with patients and their use of race and ethnicity data impact patient-physician relationships, clinical decision-making, and patient outcomes.

The psychosocial impact of leg ulcers in patients with sickle cell disease: I don't want them to know my little secret.

BACKGROUND: Sickle cell disease (SCD) impacts millions of individuals worldwide and more than 100,000 people in the United States. Leg ulcers are the most common cutaneous manifestation of SCD. The health status of individuals living with chronic leg ulcers is not only influenced by clinical manifestations such as pain duration and intensity, but also by psychosocial factors. Garnering insights into the psychosocial impact can provide a more holistic view of their influence on quality of life. METHODS: Semi-structured interviews were conducted with participants living with active SCD-associated leg ulcers or with a history of ulcers. Subjects were recruited from an ongoing study (INSIGHTS, Clin Trial.Gov NCT02156102) and consented to this qualitative phase of the study. Five areas were explored: leg ulcer pain, physical function, social-isolation, social relationships and religious support. Data was collected from 20 individuals during these interviews and a thematic analysis was performed and reported. RESULTS: Twenty participants with a mean age of 42.4 (SD ± 11.1years) were included in the study. Major themes identified included:1) pain (acute and chronic); 2) compromised physical function as demonstrated by decreased ability to walk, run, and play sports; 3) social isolation from activities either by others or self-induced as a means of avoiding certain emotions, such as embarrassment; 4) social relationships (family support and social network); 5) support and comfort through their religion or spirituality. CONCLUSIONS: SCD patients with leg ulcers expressed that they experience social isolation, intense and frequent ulcer pain, and difficulty in physical function. SCD-associated leg ulcers have been studied from a clinical approach, but the psychosocial factors investigated in this study informs how quality of life is impacted by the leg ulcers.