OBJECTIVES : Patients living with biliary tract cancer (BTC) experience decline in their health-related quality of life (HRQoL) owing to disease- and treatment-related symptoms. This study aimed to develop a comprehensive understanding of the patient experience of BTC-related signs/symptoms and the impacts of these on daily functioning and HRQoL.

METHODS : Patients diagnosed with BTC participated in qualitative semi‑structured concept elicitation interviews (75–90 minutes). Concept saturation was assessed over 5 interview waves. To guide the patient interviews, signs/symptoms and impacts of BTC were explored by targeted literature searches and 5 clinician interviews. Patient interviews were transcribed and coded using qualitative research software. A sign/symptom or impact was deemed as ‘salient’ if mentioned by ≥50% of patients, with a mean disturbance rating of ≥5 (0–10 scale). A conceptual model of BTC‑related signs/symptoms and impacts was produced.

RESULTS : Interviews with 23 patients (78% women; median age: 54 years [range: 27–80]; disease stages: early, n=3; locally advanced, n=11; metastatic [non-resectable], n=9) identified 79 concepts (66 signs/symptoms and 13 impacts). Of these, 51 signs/symptoms and 8 impacts were not previously identified from the literature or clinician interviews. Concept saturation was reached after the fourth interview wave. Salient signs/symptoms were fatigue/lack of energy (mentioned by all), abdominal pain, lack of appetite, difficulty eating/feeling of fullness, abdominal bloating, diarrhoea, nausea/queasiness, constipation, insomnia, other pain, itchy skin, fever/chills, sensitivity to cold, and muscle loss. Salient impacts fell into physical (difficulty walking), emotional (depression), and cognitive (memory loss, fuzzy brain) domains. The conceptual model included 50 signs/symptoms and 13 impacts.

CONCLUSIONS : Patients with BTC reported a range of signs/symptoms and impacts that negatively affect daily functioning and HRQoL, including some that had not been identified previously. These findings highlight the importance of obtaining information on the patient experience directly from patients when developing therapies targeting BTC.