Background: Cholangiocarcinoma (CC) is a relatively uncommon neoplasm. Diagnosis of the disease is difficult and the treatment is challenging. The optimal treatment is dependent on cooperation between surgical and oncology specialties. During treatment, patients therefore need to transition between specialties.
Aim: The primary aim was to obtain knowledge of the first symptoms of disease as experienced by patients to attendance at the specialized gastroenterology or oncology unit. Secondly, to gain knowledge of how patients experienced the diagnosis and subsequent treatment of the disease, specifically focusing on the transition between the surgery and oncology units.
Methods: We interviewed 11 informants diagnosed with CC through focus group interviews using a semi structured interview guide. Informants were recruited from a tertiary Hospital in the Capital Region of Denmark. Interview data were analyzed using systematic text condensation.
Results: Informants experienced numerous delays in the diagnostic process; all of which were perceived stressful. Delays occurred not only because the disease is rare and therefore seldom the first diagnostic option that is considered, but also more structural issues such as public holidays led to further delays after the initial diagnosis. At diagnosis, informants clearly felt that healthcare staff screened patients to assess how bluntly they could convey the diagnosis. Informants emphasized the importance of not concealing the truth, as this would not change their situation. In the transition between specialties, informants received conflicting information about their treatment and prognosis; this was experienced as very energy consuming. Inconsistent information from physicians fostered confusion among informants, and made them insecure about what information to rely on and subsequently the treatment itself.
Conclusions: Patients with CC experienced the course of being diagnosed flawed with stressful and at time unnecessary delays. Truthful and consistent information enhanced trust and reduced stress for these patients when transitioning between surgical and oncological specialties.