Cholangiocarcinoma (CCA) is a rare malignancy of the bile ducts with a very poor prognosis.1 CCA is the most common biliary tumor and the second most common hepatic malignancy worldwide. Overall, CCA accounts for 3% of gastrointestinal tumors overall.2
Patients with CCA may present with jaundice and also with nonspecific symptoms such as malaise, fatigue, and abdominal pain. In many cases, however, patients with CCA are asymptomatic, and the disease is found during a routine exam.3 Because no tests are available that allow these tumors to be detected early, an early diagnosis of CCA can be very challenging.4
A diagnosis of cancer causes a high degree of psychological and emotional distress to patients and their families. Patients must make difficult decisions regarding which course of treatment to follow and which consequences of pharmacotherapy they are prepared to accept. These decisions are particularly important as outpatient treatment becomes more frequent and both patients and caregivers must deal with the adverse effects of treatment while they are at home.5
Importance of Patient Education
CCA is often diagnosed after the disease has progressed significantly.6 Patient education about cancer is therefore important to ensure that signs and symptoms, when present, are recognized as soon as possible. With an early diagnosis, a specialized medical team is able to determine the best course of action. Patients must be informed about their diagnosis and treatment, the side effects that can be expected during and after treatment, and self-care.
Benefits of Patient Education in Cholangiocarcinoma
Patient education during cancer treatment is linked to several benefits: greater satisfaction with treatment, a higher degree of patient involvement in the decision-making process, decreased anxiety and depression, and an increased ability to live with a diagnosis of cancer and its treatment.7 Education can also help patients communicate better with their families and improve their quality of life. A patient who is satisfied with the level and quality of information received will be more likely to comply with medical treatments and provider recommendations, so that outcomes are improved.5
The Cholangiocarcinoma Foundation is a nonprofit organization whose mission is to improve the quality of life of patients with CCA.8 The foundation is focused on finding a cure for CCA and for that reason supports innovative research that may lead to new diagnostic techniques and treatments. The International Cholangiocarcinoma Research Network (ICRN), a program sponsored by the Cholangiocarcinoma Foundation, promotes collaboration among institutions to increase knowledge of the causes of CCA, how it can be prevented, and how the diagnosis and treatment of CCA can be improved.9 The goal of the ICRN is to shorten the time between the discoveries of clinical researchers and their implementation in medical practice.
The Alan Morement Memorial Fund (AMMF)–The Cholangiocarcinoma Charity, registered in the United Kingdom, is dedicated to providing information and support to patients with CCA and their caregivers.10 The AMMF, in collaboration with the European Society for Medical Oncology (ESMO), has developed a comprehensive guide to current information on CCA; topics include treatment options, side effects of treatment, how to manage side effects, available clinical trials, and tests available for diagnosing CCA.
The American Cancer Society (ACS) is a voluntary health organization that, in addition to fostering innovation in cancer research, advocates for healthful lifestyles that may help to prevent cancer.11 The ACS makes available several programs and services designed to help patients during and after cancer treatment; it offers emotional support as well as up-to-date information on bile duct cancer. Digital resources are available for download that healthcare providers can use to share cancer information with their patients.
The Cancer Patient Education Network (CPEN) is open to healthcare professionals who wish to share best practices regarding cancer patient education.12 Nurses, health educators, researchers, and others dedicated to the education of patients with cancer can join this society, which provides information and education to patients and families. Information on CCA can also be found through the National Cancer Institute (NCI).13 The NCI supports cancer research and the dissemination of information to patients, families, and caregivers. Several publications dedicated to patient education can be downloaded from the NCI website.
International Cholangiocarcinoma Patient Registry
The International Cholangiocarcinoma Patient Registry (ICPR) provides information on patients with CCA.14 It collects data on the incidence and prevalence of CCA and facilitates the screening of patients who may wish to enroll in a clinical trial. The mission of the ICPR is to support and promote research that can be used to develop new and effective methods of diagnosing and treating CCA.
1.Blechacz B. Cholangiocarcinoma: current knowledge and new developments. Gut Liver. 2017;11(1):13-26. doi:10.5009/gnl15568
2. Rizvi S, Gores GJ. Pathogenesis, diagnosis, and management of cholangiocarcinoma. Gastroenterology. 2013;145(6):1215-1229. doi:10.1053/j.gastro.2013.10.013
3. Doherty B, Nambudiri VE, Palmer WC. Update on the diagnosis and treatment of cholangiocarcinoma. Curr Gastroenterol Rep. 2017;19(1):2. doi:10.1007/s11894-017-0542-4
4. Early detection, diagnosis and staging. American Cancer Society. Accessed June 27, 2021.
5. Chua GP, Tan HK, Gandhi M. What information do cancer patients want and how well are their needs being met? Ecancermedicalscience. 2018;12:873. doi:10.3332/ecancer.2018.873
6. Sapisochin G, Ivanics T, Subramanian V, Doyle M, Heimbach JK, Hong JC. Multidisciplinary treatment for hilar and intrahepatic cholangiocarcinoma: a review of the general principles. Int J Surg. 2020;82S:77-81. doi:10.1016/j.ijsu.2020.04.067
7. Habimana O, Mukeshimana V, Ahishakiye A, et al. Standardization of education of patients with cancer in a low- and middle-income country: a quality improvement project using the Cancer and You booklet. J Glob Oncol. 2019;5:1-6. doi:10.1200/JGO.19.00118
8. This is us. Cholangiocarcinoma Foundation. Accessed June 27, 2021.
9. International Cholangiocarcinoma Research Network. Cholangiocarcinoma Foundation. Accessed June 27, 2021.
11. About the American Cancer Society. American Cancer Society. Accessed June 27, 2021.
12. About the Cancer Patient Education Network (CPEN). Cancer Patient Education Network. Accessed June 27, 2021.
13. Patient Education Publications. National Cancer Institute. Accessed June 27, 2021.
14. International Cholangiocarcinoma Patient Registry. Cholangiocarcinoma Foundation. Accessed June 27, 2021.
Article reviewed by Harshi Dhingra, MD, on July 1, 2021.