Understanding Patient Experience in Biliary Tract Cancer: A Qualitative Patient Interview Study

Abstract

Introduction: Patients living with biliary tract cancer (BTC) experience a decline in healthrelated quality of life (HRQoL). This study aimed to obtain a comprehensive understanding of the patient experience of BTCrelated signs/symptoms and the impacts of these on daily functioning and HRQoL. Methods: Patients with BTC participated in qualitative semi-structured concept elicitation interviews. Signs/symptoms and impacts of BTC were initially explored by targeted literature searches and interviews with five clinicians. Patient interviews were transcribed and coded using qualitative research software. Concept saturation was assessed over five interview waves. A sign/symptom or impact was defined

Natural Language Processing for Automated Classification of Qualitative Data From Interviews of Patients With Cancer

“…Manual processing of HCC and BTC interview data sets has previously been reported. 48,54 Participant demographics and clinical characteristics for each data set are listed in the Appendix in the Supplemental Materials found at https://doi.org/10.1016/j. jval.2022.06.004.…”

Emerging Systemic Therapies in Advanced Unresectable Biliary Tract Cancer: Review and Canadian Perspective

“…Quality of life is also of great importance to patients with BTC and must be considered in the value assessment of a therapy [ 66 ]. The Magnitude of Clinical Benefit Scale created by an ESMO working group (ESMO-MCBS) incorporates quality of life measures by increasing the clinical benefit score of a drug if quality of life and/or major toxicity is improved, such that drugs demonstrating a smaller magnitude of benefit for efficacy may still be categorized as substantially beneficial if these criteria are met [ 67 ].…”

Quality of Life and Symptom Management in Advanced Biliary Tract Cancers

“…Frequently reported symptoms include jaundice, abdominal pain, pruritus, nausea, unintentional weight loss, fever, and fatigue [20][21][22]. In addition to directly impacting QoL, these symptoms have also been found to adversely impact emotional well-being, as well as physical and cognitive functioning [15,16]. Early and effective symptom management has the potential to improve quality of life, as well as mortality, for many patients.…”

“…Chemotherapy may relieve tumor-related symptoms, improve quality of life, and prolong survival in select patients with advanced BTC [30]. In others, particularly patients with already poor performance status or very advanced disease, systemic chemotherapy can lead to a rapid decline in HRQoL [16,18]. A clear understanding of how systemic chemotherapy impacts quality of life is vital in determining which patients benefit from treatment and in navigating treatment discussions.…”

“…Health-related quality of life (HRQoL) has been found to be prognostic of survival in patients with hepatobiliary cancers even when controlling for disease-specific factors, treatment-related factors and demographics [13,14]. Unfortunately, advanced BTCs are associated with poor HRQoL at baseline [15][16][17][18]. Multiple symptom burden is common in patients with BTCs and often results in the rapid decline of physical functioning and emotional well-being [18,19].…”