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Diagnostic journey and life impact of cholangiocarcinoma: results from surveys of patient and caregiver experiences

Kristen Bibeau‡

Tara D Jackson‡

Melinda Bachini

Anouk Lindley

Fernando Blanco

Christine LaFiura

Haobo Ren

Stacie Lindsey

Kristen Bibeau‡

Incyte Corporation, Wilmington, DE 19803, USA

‡Authors had equivalent contributions to the manuscript

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Tara D Jackson‡

*Author for correspondence: Tel.: +1 302 498 6700;

E-mail Address: tajackson@incyte.com

https://orcid.org/0000-0002-5954-6425

Incyte Corporation, Wilmington, DE 19803, USA

‡Authors had equivalent contributions to the manuscript

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Melinda Bachini

Cholangiocarcinoma Foundation, Salt Lake City, UT 84096, USA

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Anouk Lindley

Incyte Corporation, Wilmington, DE 19803, USA

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Fernando Blanco

Incyte Corporation, Wilmington, DE 19803, USA

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Christine LaFiura

Envision Health Partners, Riverside, CT 06878, USA

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Haobo Ren

Incyte Corporation, Wilmington, DE 19803, USA

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Stacie Lindsey

Cholangiocarcinoma Foundation, Salt Lake City, UT 84096, USA

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Published Online:5 Dec 2023https://doi.org/10.2217/fon-2023-0151

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Abstract

Aim: To understand cholangiocarcinoma symptoms, diagnosis and treatment experience from the patient and caregiver perspective, including cholangiocarcinoma's impact on daily life, quality of life (QoL) and mental health. Methods: Patients and caregivers participated in two online surveys (in partnership with the Cholangiocarcinoma Foundation). Results: The patient survey data (n = 707) show a substantial impact of cholangiocarcinoma on QoL and mental health, with 34% of patients reporting symptoms consistent with moderately severe/severe depression. The caregiver survey data (n = 60) show that although caregivers experience satisfaction in their role of caring for a loved one, managing the demands of caregiving exacts a physical, mental and emotional toll. Conclusion: These surveys highlight the need for better palliative and supportive care interventions.

Plain language summary

What is this article about?

It shows results from two surveys, one for people with cholangiocarcinoma (CCA, pronounced kō·lan·jee·ō·car·sin·nō·muh), and one for caregivers (people who take care of family or friends with CCA without payment). CCA is a rare and aggressive cancer. The caregivers we surveyed were not necessarily taking care of the people with CCA who we surveyed. We did the surveys to find out how CCA changed the lives of people in these two groups.

What were the results?

We surveyed 707 people with CCA. Patients reported in the survey that having CCA impacted their daily lives in lots of ways. Most needed help with daily chores like housekeeping and shopping. Both tiredness and anxiety were reported by about two in three people with CCA. More than one in three had said they had symptoms indicating potential depression, which means patients should have their mental health evaluated. CCA also reduced their sexual desire and intimacy with their partner.

We surveyed 60 caregivers who reported both good and bad experiences taking care of a person with CCA. The good experiences included knowing that their loved one was well cared for and learning to deal with difficult situations. Many caregivers also felt closer to their loved one with CCA. The bad experiences included exhaustion and emotional and mental stress. Caregivers felt challenged by trying to understand CCA and the treatment options available.

What do the results of the study mean?

Patients with CCA and their caregivers need more help and support.

Graphical abstract

Keywords:

Papers of special note have been highlighted as: • of interest

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Vol. 20, No. 15

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History

Received 21 February 2023

Accepted 7 September 2023

Published online 5 December 2023

Published in print May 2024

Information

Keywords

Author contributions

All authors contributed to the acquisition, analysis and interpretation of data, as well as to the drafting and critical review of the manuscript, and approved the final version for publication.

Acknowledgments

The authors wish to thank the patients and caregivers who completed the survey.

Financial disclosure

This study was funded by Incyte Corporation (Wilmington, DE, USA). TD Jackson and H Ren are employees and receive stock options from Incyte Corporation. K Bibeau, A Lindley and F Blanco are former employees of Incyte Corporation. M Bachini and S Lindsey are the Director of Patient Services and Founder & CEO of Cholangiocarcinoma Foundation, respectively. C LaFiura is the co-founder of Envision Health Partners. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Competing interests disclosure

The authors have no competing interests or relevant affiliations with any organization or entity with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Writing disclosure

Medical writing assistance was provided by Upasna Thapar (Envision Pharma Group, PA, USA), and funded by Incyte Corporation.

Ethical conduct of research

The authors state that Western Institutional Review Board reviewed and provided exemption status to this study under 45 CFR §46.104(d)(2). In addition, survey respondents provided permission for their data to be analyzed and published.

Data sharing statement

All data generated or analyzed during this study are included in this article. Further inquiries can be directed to the corresponding author (email: tajackson@incyte.com).

Open access

This work is licensed under the Attribution-NonCommercial-NoDerivatives 4.0 Unported License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/4.0/

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