Beyond a Diagnosis: A Qualitative Study Exploring Patient and Caregiver Expectations About Emergency Department...

Patients presenting to emergency departments (EDs) have been described as expecting a diagnosis or explanation for symptoms, yet diagnostic uncertainty is especially prevalent for those with nonspecific symptoms like headache, dizziness, abdominal pain, and chest pain. Given limited research examining patient and caregiver expectations about diagnosis when uncertainty exists, we aimed to investigate these expectations to inform safe, high quality, patient-centered diagnostic communication in emergency settings.

We conducted a qualitative study in two Australian metropolitan EDs using semi-structured interviews with patients presenting with nonspecific symptoms (n = 24) and their caregivers (n = 11) about their expectations regarding the visit and diagnosis. We analyzed interview transcripts in NVivo using content and thematic analysis.

Participant expectations about their ED visit and diagnosis were shaped by previous healthcare experiences, understanding of symptom characteristics, familiarity with medical knowledge and uncertainty tolerance. Three themes captured expectations by content: outcomes (understanding, treatment and guidance), processes (diagnostic investigations and being taken seriously), and the health service (timely, integrated care). While most participants reported wanting a diagnosis or explanation, many demonstrated awareness of diagnostic uncertainty and its implications, revealing diverse expectations across a certainty spectrum. Many expected diagnostic investigations, regarding them as integral to determining outcomes but recognized they may not resolve uncertainty. Some regarded EDs as a 'one-stop shop' providing timely diagnostic outcomes. Patients who had previously experienced symptom invalidation expressed strong expectations about being taken seriously.

Patient and caregiver expectations about their ED visit and diagnosis are more nuanced than previously recognized. Findings highlight the importance of clinicians soliciting and responding to hopes and expectations in ways that address the uncertainty inherent in diagnosis. Understanding patient and caregiver hopes and expectations better equips clinicians to communicate in a patient-centered way about diagnosis and the diagnostic process in EDs, to enhance care even when uncertainty persists.