The Cholangiocarcinoma Foundation’s Patient Advocacy Initiatives

TON - April 2022 Vol 15, No 2

At the 2022 Cholangiocarcinoma Foundation (CCF) Annual Conference on February 22-25, Melinda Bachini, Director of Advocacy of CCF, provided an update about the foundation’s advocacy and patient support initiatives. The goal of the CCF’s advocacy group is to provide educational and emotional support for the cholangiocarcinoma (CCA) community of patients and caregivers, and to empower them with the knowledge and guidance needed to self-advocate.

Newly Diagnosed/New to the CCF Program

Ms Bachini presented updates about the newly launched Newly Diagnosed/New to the CCF Program. She said that this program was initiated “because we knew there was a need to reach out to patients and caregivers immediately after their diagnosis. We knew that patients and caregivers needed guidance and resources that we had available for them.”

Ms Bachini reported that at the time of the CCF annual meeting, more than 700 newly diagnosed or newly connected patients with CCA and caregivers have enrolled in the program since its launch in August 2021, noting that “it has been an incredible, successful program.”

The program involves sending an introductory e-mail series that leads patients through the CCF resources and the options that are available to them, a set of positive video interviews with patients and caregivers, and a care kit that “has a lot of goodies in them, and some comfort items, just to let them know that they are not going through this alone.”

Ms Bachini provided details about the characteristics of the database of newly diagnosed patients and new caregivers in the program. In total, 420 patients and 266 caregivers were enrolled in the program. Of these, 331 had a diagnosis of (or represented patients with a diagnosis of) intrahepatic CCA, and 279 were unsure of the exact diagnosis.

The majority (N = 619) of the enrollees had not heard of the CCF before. The majority of the patients were diagnosed between 2020 and 2022, including 127 in 2022, 430 in 2021, and 68 in 2020.

Responding to questions from CCF, the majority of the enrollees concurred that this new program was helpful, providing important information in the following ways:

“Encouraged me to get a second opinion from a CCA specialist”
“Provided me with helpful education materials about CCA”
“Informed me about biomarker testing”
“Offered me hope about long-term survival.”

Additional CCF Initiatives

Ms Bachini provided updates on other CCF initiatives that were launched in recent years.

Support groups. A virtual patient and caregiver support group platform was launched in September 2020. Through this CCF platform, in 2021, 26 support groups were held and included a total of 560 patient and caregiver attendees. Ms Bachini hopes that 50% of newly diagnosed patients with CCA will enroll in 2022.

New research webinar. A webinar series was implemented to inform patients and caregivers about the most up-to-date research, science, and clinical trials. A total of 10 webinars were conducted in 2021 with 1055 registered patients, caregivers, and research advocates, which received 2090 on-demand views.

Nutrition resource. The CCF developed a nutritional and diet resource in partnership with the Oncology Dietician Practice Group (ON DPG), designed specifically for patients with CCA.

As a CCA survivor herself, Ms Bachini said, “Nutrition has always been one of the most asked-about questions from patients and caregivers. And I think it’s because as patients, we feel that that’s the one thing we have some control over during this diagnosis.”

She noted that this resource contains helpful tips, recipes, and guidance about key nutrition principles for patients with CCA.

Patient registry. A new patient registry was launched by the CCF in partnership with Ciitizen (which was later acquired by Invitae), a health technology platform for patient data collection that may be used to advance CCA research, as well as to recruit patients for clinical trials, and help patients collect their medical records at no cost to them.

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