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Updated: Mar 25, 2026

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Patient Experiences of Acute Pain Communication in Sickle Cell Disease and Perspectives on Improving Clinician
Miranda Ravicz Adelmann1, Michelle S Diop2, Sharl S Azar3
1Division of Palliative Care and Geriatric Medicine and the Center for Optimal Aging and Serious Illness (CASI), Massachusetts General Hospital, Boston, USA.
Abstract:
Pain in sickle cell disease (SCD) causes profound emotional and psychological consequences. Poor communication between clinicians and people with SCD can worsen the acute pain experience, yet strategies to improve these interactions remain unclear. We aimed to understand how people with SCD communicate with clinicians about pain and how patient-clinician communication could be improved.We conducted semi-structured qualitative interviews with people with SCD aged 16 and older (n = 30). We used rapid qualitative analysis to provide early insights into intervention development.Five themes emerged: 1) people with SCD want clinicians to believe their pain experiences, to show they care, and to demonstrate knowledge about SCD; 2) SCD-related pain directly impacts the ability to communicate; 3) communication about SCD pain should be tailored in content and pace based on the pain severity; 4) prior experiences influence how people with SCD communicate about pain; and 5) healthcare system and institutional factors can positively influence patient-clinician communication in SCD.Empathic communication from clinicians can have significant impact on the pain experiences of people with SCD, who adapt their communication strategies to access proper medical care. Training clinicians in SCD-specific communication skills may improve pain care for this population.
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