Patient Perspectives on Enhancing Clinician Communication About Pain in Sickle Cell Disease

Abstract

Introduction 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. Methods 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. Results 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. Discussion Empathic communication can have significant impact on the pain experience of people with SCD. Training clinicians in SCD-specific empathic communication skills may improve pain care for this population.