Exploring the diagnostic journey and life impact of patients with cholangiocarcinoma (CCA): Results from a large patient survey in the United States.
Authors: Kristen Bibeau, Melinda Bachini, Anouk Lindley, Natalie Marie Barkey, Stacie Lindsey
Journal: Journal of Clinical Oncology (2021)

277 Background: Patients (pts) with CCA typically present with advanced disease and face a poor prognosis and impaired quality of life (QoL). Despite improvements in therapies, the impact of CCA on pts’ daily lives has been rarely studied. This pt-focused survey explored the diagnostic journey, life impact including work status, QoL and psychosocial impacts of CCA. Methods: Pts with CCA were recruited in partnership with the Cholangiocarcinoma Foundation from Aug 23 through Sept 20, 2019, and were categorized by AJCC stage. Pts participated in a 30-min online survey to assess disease staging, symptoms, demographics, diagnosis journey, daily life impact, mental health, and sexual function. The survey included the validated disease specific European Organization for Research and Treatment of Cancer (EORTC) QLQ-BIL21, the Patient Health Questionnaire-9 (PHQ-9), and the Work Productivity and Activity Impairment (WPAI) questionnaire. Results: Of 1,286 pts invited, 707 (55%) completed the survey (male, 77%; age ≥55 y, 13%; currently employed, 78%; perihilar CCA, 47%; intrahepatic CCA, 41%; distal CCA, 12%; stage 1–2, 22%, stage 3a, 51%, stage 3b–4, 20%, in remission, 4%, unknown stage, 2%). Median duration from symptom onset to CCA diagnosis was 19 months (range, 1–241), and median duration from diagnosis to completing survey was 24 months (0–744). Initial misdiagnosis occurred in 35% of pts (n=247); among whom the most common misdiagnosis was gall bladder cancer (52% [n=129]); misdiagnosis of cancer of unknown origin occurred in 9% of pts (n=21). CCA was most frequently first suspected and diagnosed by oncologists (38% [n=269] and 70% [n=492]); among non-specialty physicians, more first suspected than diagnosed CCA (eg, primary care physicians, 22% [n=156] vs 3% [n=22]). Pts’ primary considerations in treatment decisions were physician judgment (38% [n=272]), QoL (16% [n=111]), time spent in hospital (11% [n=75]), laboratory results (11% [n=79]), other pt experiences (6% [n=42]). On the EORTC QLQ-BIL21, pts reported negative life impact from anxiety (mean [SD], 52.9 [19.2]), tiredness (52.3 [19.3]), and treatment (51.3 [28.8]). On the WPAI, 61% of pts (n=429) reported some, and 28% (n=200) reported considerable impact on work status. On the PHQ-9, 58% (n=408) of pts reported significant impact of depression on daily life, with 72% (n=506) and 25% (n=177) reporting that depression makes daily life somewhat, or very difficult, respectively. Pts also reported considerable or some impact on sexual desire (51% [n=362]; 36% [n=255]) and intimacy (47% [n=332]; 39% [n=273]). Conclusions: Pts with CCA who participated in this survey were mostly &lt;55 y of age and had experienced CCA symptoms for an extended time (2 y) before diagnosis, at which time CCA was often initially misdiagnosed. The burden of CCA symptoms on daily lives, work productivity, and mental health is immense.