At the 2020 virtual conference of the Cholangiocarcinoma Foundation (CCF), results of a patient survey conducted in summer 2019 by the CCF and Incyte Corporation, provided real-life responses from patients regarding the impact of a cholangiocarcinoma (CCA) diagnosis on patients with this rare disease.
The survey objectives were to understand the impact of CCA on the patient, including the effect of receiving the diagnosis; understand the experiences of patients with CCA in terms of the treatment decision; highlight the individual patient’s perspective on the therapies and outcomes; and explore the impact of disease management on the patient’s quality of life and psychosocial aspects.
Overall, the 3 key takeaways from the survey were:
The results were presented by Kristen Bibeau, PhD, MSPH, Senior Director and Head, Global Health Outcomes and Real-World Evidence Generation, Incyte Corporation, Wilmington, DE.
A total of 707 patients with CCA were recruited for a 30-minute online survey. Of the 7070 patients, 157 patients noted their disease was stage I-II, and 364 patients noted it was stage IIIa, indicating that they could still have surgery as a treatment option. In addition, 97 patients stated that their disease was at stage IIIb, which means they were not eligible for surgery, and 43 patients had metastatic (stage IV) disease. Furthermore, 30 patients indicated that their disease was in remission. The majority (77%) of the respondents were male, and 63% of the patients were older than age 45 years.
The respondents noted that on average, it took 22 months from the time they first noticed symptoms to the time they received a diagnosis of CCA. Not surprisingly, a significant proportion of the patients reported that the stage of their CCA progressed between the time they were first diagnosed and when they responded to the survey.
The survey also asked about the anatomic location of the patient’s tumor. Overall, 47% of the patients stated that they were diagnosed with a perihilar CCA, 41% had an intrahepatic CCA, and 12% were diagnosed with a distal extrahepatic tumor.
When the patients were asked if they were misdiagnosed, more than one-third (35%) indicated that they were initially diagnosed with another type of cancer. Specifically, the following percentages of patients were initially misdiagnosed with the following tumors:
Of note, 52% of the patients indicated that they sought a second or third opinion before they were diagnosed with CCA, and that on average, they visited 2.5 oncologists before they received the correct diagnosis of CCA.
Patients were asked to identify the key driver for the treatment selection for their tumor. Not surprisingly, 61% noted that their physician’s judgment was the main driver of the treatment selection. However, it was surprising that the second top response, 40% of the patients, for the driver of treatment decision was the impact of a treatment choice on their quality of life.
This showed that quality of life was the most important aspect of treatment selection even for patients with later-stage (stages IIIb-IV) disease. For this group of patients, quality of life rivaled physician judgment as the most critical factor in selecting a treatment regimen (23% vs 26%).
Patients with CCA have a wide variety of symptoms, such as fatigue, diarrhea, jaundice, abdominal pain, constipation, weight loss, pruritus, anxiety, depression, as well as other manifestations related to their disease.
The survey revealed that there was not one symptom that had a greater impact on a patient’s quality of life over another. Rather, patients rated most symptoms as having a similarly negative effect on their quality of life and on their day-to-day activities.
The one common characteristic related to disease symptoms observed in the survey was among patients with intrahepatic CCA and stage IIIa disease (ie, those eligible for surgical resection). This patient group reported the most symptoms and suffered from their symptoms more often than other patients.
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