Abstract / Summary
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. 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. 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. 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. Many individuals experience ongoing physical symptoms that doctors cannot easily explain through standard medical tests. This study looked at how the way doctors explain these symptoms affects how patients feel about their medical care. Using data from a large group of patients in France, researchers analyzed written descriptions of medical appointments and the way patients experienced medical communication about their symptoms. The study found that patients feel most supported when doctors acknowledge their symptoms as real and offer clear, functional explanations alongside practical treatment steps. Simply telling patients “nothing is wrong” or suggesting it is “all in their head” causes considerable distress. Improving how doctors are trained to talk about these complex conditions could greatly enhance patient trust and care. Rambaud et al. describe the experience of over 1700 patients with medically unexplained symptoms (MUS) according to three types of communication: explicit or mechanistic diagnoses, denial of disease, or acknowledgment of uncertainty. Patients who receive explanations denying the presence of a disease tend to report very negative experiences.