Abstract
Background
How physicians communicate explanations about Medically Unexplained Symptoms and how patients experience this communication remains insufficiently studied. We aimed to explore patients' experiences with medical communication about medically unexplained symptoms.Methods
We conducted a national cross-sectional survey among adult patients recruited through the french ComPaRe e-cohort. Patients with chronic unexplained symptoms completed a questionnaire assessing symptoms characteristics, diagnoses received and experiences of medical communication. Open-ended narratives were analyzed using inductive thematic analysis. Quantitative data were weighted to represent the national population.Results
Here we show that the primary determinant of patient experience is not the diagnostic label itself, but rather the way physicians communicate and recognize patient suffering. Among 2,673 respondents with persistent symptoms, 1,868 report experiencing unexplained conditions. Three main types of explanations are identified: explicit diagnoses (80.5%), explanations denying the disease ("It's in your head") (65.8%), or an acknowledgment of physician's uncertainty ("I don't know"). Explanations denying the disease are poorly received, with nearly all associated comments expressing negative reactions like shame or guilt. In contrast, explicit diagnoses are better accepted. Functional disorder labels frequently trigger positive experiences when framed within an explanatory model, whereas explicit disease labels are often accompanied by frustration regarding therapeutic options.Conclusions
Medical communication plays a central role in shaping patient experience. Explanations denying the presence of a disease are poorly accepted by patients and should be avoided. Explicit diagnoses, including functional disorders, are well received when framed within explanatory models offering targeted therapeutic options.