Abstract

Biliary tract cancers (BTCs), including cholangiocarcinoma and gallbladder cancers, are characterized by their rarity, poor prognosis, limited treatment options, and significant psychosocial burden among affected individuals. Hope and loneliness are known to play significant roles in shaping cancer-related experiences and outcomes; however, their trajectories in the context of rare cancers remain unexplored. The Canadian Cholangiocarcinoma Collaborative (C3) was founded to enhance access to treatment, research, and support for individuals affected by BTC in Canada. This mixed-methods study aimed to measure hope and loneliness among patients and caregivers over time and to gain a deeper understanding of their experiences. A total of 92 patients and 44 informal caregivers, self-, peer-, or physician-referred, consented to participate in this study. Participants completed electronic self-reported measures of hope (Hope Herth Index (HHI), 12 items) and loneliness (UCLA Loneliness scale, 20 items) upon joining C3 (baseline, T0), following the first informational session with a C3 research navigator (T1), and after two to three months (T2). A subsample (n = 14) also participated in two online focus groups. At baseline, participants reported relatively high levels of hope (patients: M = 39.8, SD = 4.9; caregivers: M = 38.9, SD = 4.68), with the HHI ranging from 12 to 48, where higher scores indicate higher hope. They also reported low-to-moderate levels of loneliness (patients: M = 32.13, SD = 9.63; caregivers: M = 36.69, SD = 12.37), with the scale ranging from 20 to 80, where low loneliness: 20–34; moderate: 35–49; moderately high: 50–64; and high: 65–80. At T1, a significant decrease in hope (mean difference [MD] = −1.38, 95% CI [−2.64, −0.11], p = 0.029) and a significant increase in loneliness (MD = 1.75, 95% CI [0.27, 3.23], p = 0.016) were found among patients, with no further significant changes from T1 to T2. Among caregivers, no significant changes were observed from baseline to T1; however, at T2, there was a significant decrease in hope (MD = −2.01, 95% CI [−3.61, −0.40], p = 0.010) and a significant increase in loneliness (MD = 4.54, 95% CI [1.31, 7.77], p = 0.004). No significant differences in hope or loneliness were found between participants who engaged in C3 activities and those who did not. Dyadic analysis revealed significant correlations between patients’ and caregivers’ hope and loneliness at baseline and at T2. Despite the significant changes, findings indicate consistently high levels of hope and low-to-moderate levels of loneliness over time. Focus group analyses further contextualize quantitative findings by highlighting patients’ and caregivers’ experiences in greater depth. The results serve to inform current and future initiatives aimed at providing timely, personalized psychosocial support to patients and caregivers affected by BTC.

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