Cholangiocarcinoma: Often Misdiagnosed, Always Impactful

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A large survey of patients with cholangiocarcinoma indicates the toll this cancer takes on patients, even those with early-stage disease, as reported at the 2021 Gastrointestinal Cancers Symposium by Kristen Bibeau, PhD, MSPH, Head of Global Health Outcomes and Real-World Evidence Generation at Incyte Corporation, Wilmington, Delaware. 

“The burden of cholangiocarcinoma symptoms on daily lives, work productivity, quality of life, mental health, and sexual function is immense,” Dr. Bibeau noted.

Patients with cholangiocarcinoma typically present with advanced-stage disease and face a poor prognosis. Not enough is known as to how this cancer impacts patients’ daily lives, she said.

Kristen Bibeau, PhD, MSPH

Kristen Bibeau, PhD, MSPH

To provide insights on this, Dr. Bibeau led a cross-sectional patient-focused study that explored the diagnostic journey and life impact of this cancer. In partnership with the Cholangiocarcinoma Foundation, her team recruited patients to participate in a 30-minute online survey to assess disease staging, symptoms, population demographics, diagnostic journey, daily life impact, mental health, and sexual function. 

They invited 1,286 patients, and 707 (55%) completed the survey. This included 157 patients with stage I/II disease, 364 with stage IIIA disease, 140 with stage IIIB or IV disease, and 30 patients who self-identified as being in remission. Subtypes were perihilar in 47%, intrahepatic in 41%, and distal cholangiocarcinoma in 12%. Most patients were aged 45 and older and male.

Delayed Diagnosis Common

On average, patients reported that it took 22 months from the initial onset of symptoms to the diagnosis of cholangiocarcinoma. More than one-third (35%) were initially diagnosed with another cancer prior to cholangiocarcinoma being confirmed.

Cholangiocarcinoma was suspected by an oncologist in 38% of patients and diagnosed by an oncologist in 70%. Primary care physicians suspected or diagnosed the disease in 22% and 3%, respectively, and gastroenterologists in 17% and 12%, respectively. 

“Patients’ physician’s judgment was the main driver of their treatment decisions (61%), followed closely by quality of life (40%),” she added. 

Symptoms and Quality of Life

All patients reported experiencing at least 1 of 16 cholangiocarcinoma-specific symptoms. “For almost every symptom, most patients felt a great deal, or a considerable impact, on their lives. And of the 78% of patients employed, 70% reported some work impairment,” she said. 

Across all domains of the EORTC QLQ-BIL21 instrument, patients reported a substantial negative impact on quality of life. Patients aged 18–44 reported worse quality-of-life scores across all domains with the exception of weight loss. The worst impacts were felt in the domains of anxiety (mean score = 52.9), tiredness (52.3) and treatment-related side effects (51.3). On the PHQ-9, nearly half of the patients (47%) reported symptoms that were consistent with severe depression. Depression was prevalent in all stages of disease.

For more than 40% of patients, these symptoms were present daily or more than half of the days in the past 2 weeks. More than one-half of patients reported a considerable impact on sexual desire, and 47% said intimacy was affected.

“Findings from this survey warrant further research for a better understanding and outreach regarding the impact of cholangiocarcinoma on patients’ lives,” Dr. Bibeau concluded. 

DISCLOSURE: The study was sponsored by Incyte Corporation. Dr. Bibeau is employed by Incyte.


1. Bibeau K, Bachini M, Anouk Lindley A, et al: Exploring the diagnostic journey and life impact of patients with cholangiocarcinoma. 2021 Gastrointestinal Cancers Symposium. Abstract 277. Presented January 15, 2021.