Pain communication for children, adolescents, and adults with sickle cell disease: A scoping review

Sickle cell disease (SCD) causes severe pain from vaso-occlusive episodes and other complications. Communication about pain among individuals with SCD, caregivers, and clinicians can be complex, challenging, and sometimes contentious. Prior research has shown that people with SCD feel unheard by clinicians and that pain is undertreated. However, the literature on pain communication in SCD has never been synthesized, and its impact on patient outcomes remains unclear. This study aimed to characterize the literature on pain communication in SCD and identify evidence gaps. We conducted a scoping review of literature examining how people with SCD, caregivers, and clinicians communicate about pain. We searched PubMed, Embase, Web of Science, CINAHL, PsycINFO, and Cochrane Library for articles published before May 2026. We narratively synthesized results, informed by the Pain Assessment as a Social Transaction Model. We screened 5451 studies and included 242 (37% observational, 33% qualitative, 7% experimental/interventional). We found that pain communication is shaped by patient factors (developmental stage, prior experiences, communication and coping skills) and clinician factors (SCD knowledge/training, attitudes about SCD). Patient-clinician interactions were characterized by low levels of trust, empathy, and collaboration. Poor communication was associated with inadequate pain management, lower satisfaction, delayed care-seeking, hospital self-discharge, reduced trust, and adverse psychological consequences. Few interventions targeted pain communication. Challenges in patient-clinician pain communication in SCD are well documented and associated with serious consequences, but efforts to address them remain limited. Future research should prioritize theory-informed interventions supporting effective pain communication among individuals with SCD, caregivers, and clinicians.