“I'm Just a Patient”: Fear and Uncertainty as Drivers of Emergency Department Use in Patients With Chronic Disease

Abstract

Despite focus during the past decade about the need to design a more patient-centered US health care system, patients have been minimally engaged to define what they want from it. Our objective is to engage patients to identify individual-defined priority outcomes on discharge from the emergency department (ED) and individually tailored interventions to help achieve their outcomes. We used qualitative semistructured interviews with patients with diabetes mellitus or cardiovascular disease who were being discharged from 2 EDs. Questions focused on reasons for seeking ED care, expectations about ED visits, and goals and needs for the days after ED discharge. Themes were identified with a modified grounded theory approach. Forty patients participated. Patients identified uncertainty about the significance of their symptoms and fear as a result of this uncertainty as primary drivers for their ED visit. Their primary expectation about the visit was receiving a diagnosis and reassurance. The most prominent postdischarge need was answers about the cause of their symptoms and what to expect. Patients were concerned about ability to access follow-up services because of lack of time to navigate the system, transportation, and priority scheduling needs. Suggestions for improvement focused on contacting patients (physically or virtually) once they were home and offering them expedited outpatient evaluations. Primary limitations included enrollment of patients within a single health system and only those with certain chronic conditions, both potentially limiting generalizability. Many patients have ongoing needs that are often not addressed during ED discharge. These needs are based on ongoing uncertainty about the cause of their symptoms and what to expect, and result in feelings of fear. Work is needed to develop approaches to alleviate patient fear and uncertainty and to equip providers with the capabilities and resources needed to adequately address these needs.