"About the patient, not for the patient": A qualitative study on medical reports in hepatology.

Abstract

In hepatology, clinical documentation such as post-visit summaries and discharge letters plays a crucial role in communicating medical information across complex and fragmented care pathways. While often treated as administrative tools, these documents also carry cognitive, emotional, and relational weight for patients and caregivers-especially in the context of chronic liver disease. Using a focused ethnographic approach, we conducted 14 semi-structured interviews with patients and caregivers from 11 countries, combining narrative inquiry with think-aloud protocols as participants reviewed medical reports. Thematic analysis revealed six interpretive themes describing how participants related to medical reports: reports as anchors of control; prioritizing and tracking key content; design as a gateway to usability; the emotional weight of language and tone; reports as extensions of the clinical relationship; and co-design as a pathway forward. Participants described reading reports as a routine yet emotionally charged activity, often marked by confusion, anxiety, or frustration. Some reported discovering serious diagnoses through documents alone, without preparatory discussion, which they experienced as distressing and trust-eroding. These exploratory findings suggest that clinical documentation may influence how patients and caregivers experience care. Reports perceived as complex or unclear could hinder comprehension and reassurance, while clearer and more accessible formats may help support trust and engagement. Written materials in hepatology should be linguistically accessible, structurally clear, emotionally attuned, and co-designed with patients and caregivers to enhance self-management and continuity of care.