Researchers at Ohio State University Wexner Medical Center found that the most profound source of distress for patients with sickle cell disease in a home visit program was the anticipation of going to acute care centers to manage acute pain. The study, published in Qualitative Research in Health, highlighted the need for a biopsychosocial model to treat chronic pain in sickle cell disease. Participants described “pain performativity” as a strategy to show providers their pain, and emphasized the stigma and racism surrounding care for the disease. The researchers suggested that listening to patients and addressing distress in clinical settings could improve patient experiences.
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Understanding patient distress in sickle cell disease
