39Hope, loneliness, and cancer-related experiences among Canadians affected by Biliary Tract Cancers

Background

Individuals affected by biliary tract cancers (BTC) face significant challenges. Maintaining hope, reducing isolation, and improving cancer-related experiences are therefore important. The Canadian Cholangiocarcinoma Collaborative (C3) provides services that enhance access to information, molecular testing, expert opinions, research opportunities, and support. This mixed-methods study aimed to longitudinally document hope, loneliness, and lived experiences among C3 members, including patients and caregivers.

Methods

Patients (N = 92) and caregivers (N = 44) affected by BTC in Canada consented to participate. Study measures included hope (Herth Hope Index range 12-44) and loneliness (UCLA Loneliness Scale range 20-80) at baseline (T0), two weeks after the C3 introductory informational session (Tl), and 2-3 months later (T2). Seven patient-caregiver dyads took part in virtual focus groups. Linear mixed-effects models/pairwise comparisons and thematic analysis were conducted.

Results

At T0, patients and caregivers reported high hope scores (M = 39.82 and 38.90, respectively) and low-to-moderate loneliness (M = 32.13 and 36.69, respectively). Among patients, significant decrease in mean total hope scores and increase in mean loneliness scores were found at Tl and T2 compared to T0. Among caregivers, significant decrease in mean hope scores and increase in mean loneliness scores were found at T2 compared to T0 and Tl.

Emerging qualitative themes revealed that hope fluctuated over time. The diagnostic period was reported to be particularly destabilizing, and the healthcare system was often experienced as poorly coordinated. Frustration emerged as a dominant emotional response, particularly among caregivers, with scant psychosocial support. In contrast, peer connection provided valuable guidance, with C3 seen as a source of hope by offering timely information, access to genomic testing, help navigating the healthcare system, and connections with peers.

Conclusion

Findings reveal that hope and loneliness are unstable, reinforcing the importance of early, continuous, and structured programs to better support individuals impacted by rare cancers.