Pain, uncertainty, and lack of clinical support drive emergency department utilization in cirrhosis: A qualitative study

Background: Individuals with cirrhosis frequently require Emergency Department (ED) care, with some experiencing repeated ED use, yet little is known about the patient and caregiver perspectives driving decisions to visit the ED. We aimed to explore perspectives of including high ED utilizers with cirrhosis and their caregivers to identify drivers of ED use and opportunities to optimize care. Methods: Using human-centered design methods, we conducted an in-person group engagement session with 7 adults with cirrhosis and their caregivers, recruited from recent ED encounters. A custom board-game activity facilitated the discussion. Data were analyzed using snippet extraction, affinity mapping, and affinity concept modeling. Results: Seven major themes emerged: (1) Mindset around symptoms, which includes fear, uncertainty, and caregiver burden. (2) Informational needs, including reliance on variable-quality online resources and lack of trusted education. (3) Day-to-day cirrhosis management, particularly challenges related to medications and symptom monitoring. (4) Symptom-driven ED triggers, with some prompting, urgent visits. (5) Decision-making factors, including limited alternatives to ED care and prior experiences, and mismatched patient–caregiver thresholds for seeking care. (6) Expectations of ED care, focused on pain relief and return to baseline health. (7) Challenges during ED care, including long wait times, misdiagnosis concerns, and stigma related to pain treatment. Concept modeling revealed that ED decision-making is a dynamic journey shaped by symptom severity, emotional states, logistical considerations, and evolving patient–caregiver–provider roles. Conclusions: Pain, uncertainty about symptom severity, and lack of accessible real-time clinical support were major drivers of ED utilization in cirrhosis. Interventions addressing these specific needs may reduce avoidable ED use. These findings provide a patient-informed foundation for care delivery redesign in cirrhosis.