Barriers and facilitators to urgent and emergency care-seeking during vaso-occlusive crises in adults with sickle cell disease: a systematic review

Abstract This systematic review examined patient, social, structural and healthcare factors influencing urgent or emergency care among adults with sickle cell disease (SCD) during vaso-occlusive crises (VOCs). No prior review has comprehensively synthesised factors shaping pre-arrival care-seeking in this context. The review was pre-registered on PROSPERO (CRD42023478012). We searched PubMed and Web of Science, from inception to 2nd December 2025 and CINAHL and Embase from inception to 16 June 2026, for quantitative, qualitative and mixed-methods studies examining factors influencing pre-arrival urgent care-seeking during acute VOCs in adults with SCD. We conducted a narrative synthesis, grouping similar factors and coding them as barriers or facilitators across three outcome domains: care-seeking avoidance, delayed care-seeking and willingness to seek acute care. Twelve studies published 2014—2025 met the inclusion criteria. Nine were conducted in the United States, two in Canada and one in England with none from low- and middle-income countries were identified. The most consistent barriers to acute care-seeking, particularly delayed or avoided presentation, were anticipated negative emergency department experiences, including stigma, discrimination, disbelief of pain and low confidence in timely analgesia or protocol-based care. Delays were also associated with prolonged home management, higher escalation thresholds and practical constraints such as insurance, transport and competing responsibilities. Evidence on willingness to seek acute care was limited. Methodological quality varied with concerns about representativeness, missing data and confounding in quantitative studies. Improving timely care-seeking may require more equitable, protocol-driven crisis care alongside efforts to reduce stigma and improve patient trust in acute care settings.