Use of Person-Centered Language Among Scientific Research Focused on Sickle Cell Disease

Background Sickle cell disease (SCD) is a lifelong illness affecting many individuals in the United States. Proper management of SCD is imperative, however, the unpredictability of pain crises may lead to frequent emergency department (ED) visits. This SCD feature has led to health-related stigmatization via labels and other terminology within clinical settings, which may be translated through medical research. Thus, it is important for medical literature to adhere to person-centered language (PCL) to diminish such stigmas from transcending into the clinical setting. Objective Our aim was to determine current adherence to PCL related to individuals with SCD in existing literature. Methods This was a cross-sectional design study. Published studies on SCD that used human participants were selected between January 1, 2015 and April 14, 2021. Two investigators performed screening and data procedures in a masked, duplicate fashion, with conflicts and discrepancies resolved via an arbiter. χ2 Tests and linear and logistic regressions were used for data analysis. Results After excluding editorials and commentaries, 200 articles were retained. We found that 186 publications (94%) adhered to PCL. Among articles with non-PCL, labeling occurred in 2 articles (1%) and emotional language implying suffering was identified in 10 articles (5%). Conclusions Our study suggests a widespread adherence to PCL in recent SCD literature. However, findings suggest a major disconnect between education and practice, as recent publications document the use of non-PCL terminology within EDs. Health care providers should be aware of biases and institutional resources should be allocated toward raising awareness.