Patients' Descriptions of Initial Symptoms of Cholangicarcinoma and the Journey to Diagnosis: A Qualitative Study

Introduction: Cholangiocarcinoma (CCA) is a rare cancer that is clinically silent in many patients and otherwise largely presents with non-specific symptoms. Most patients are therefore diagnosed at advanced stages.

Objective: The aim of this study was to gain knowledge of patients’ descriptions of initial symptoms of disease, their help-seeking behaviour and experience of the subsequent journey to diagnosis.

Methods: This was explored in a qualitative descriptive study with semi-structured interviews (n=15). We analyzed data using content analysis with an inductive approach.

Results: Three themes emerged: 1: Experiencing nonspecific, vague or specific symptoms: Participants experiencing non-specific symptoms tended to delay seeing their general practitioner (GP), while specific symptoms, particularly jaundice, prompted urgent GP contact. 2: Experiencing a swift versus prolonged diagnosis: participants with specific symptoms were overall swiftly referred to diagnostic testing at specialized centers while some participants with non-specific symptoms experienced a prolonged and complicated journey to diagnosis. 3: “Being in the know” during the diagnostic journey: Concrete and consistent information facilitated trust and a sense of control.

Conclusion: Campaigns sanctioning prompt help-seeking behavior for non-specific, concerning symptoms may accelerate help-seeking and potentially, detection of rare cancers such as CCA. GP elicitation of symptoms that are normalized or downplayed by patients may also facilitate earlier detection. Patient navigators could ensure the informational needs of CCA patients on the journey to diagnosis.


Kristine Elberg Dengsø, Louise Bangsgaard, Anne Marie Marcussen, Bo Marcel Christensen, Jens Hillingsø, Thordis Thomsen

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