URGENT DEADLINE: Please complete by 11:59 PM on July 11, 2021 .

This survey is being conducted by the Canadian Organization for Rare Disorders, Canadian Liver Foundation, and the Cholangiocarcinoma Foundation (USA). Your feedback is needed if you or someone you care for is affected by bile duct cancer, also known as cholangiocarcinoma, especially those with FGFR2 gene infusions or rearrangements. Patients in Canada and outside of Canada are requested to provide input to the panCanadian Oncology (CDR) within the Canadian Agency for Drugs and Technologies in Health (CADTH), the agency that recommends whether new therapies will be funded or not. Your feedback to this survey is incredibly important as CADTH begins review of a new therapy for bile duct cancer.

This survey will take approximately 15 minutes.

Your responses will NOT be personally identified. All responses will be summarized as part of the submission to pCODR. In our experience, the pCODR committee listens very carefully to patient input. Patient input is very important to assuring the committee makes the right decision.

Thank you in advance for your cooperation.

Question Title

* 1. Which of the following describes how you are affected by bile duct cancer?  If more than one category applies, please choose the best answer and use that perspective to answer the remaining questions.

Question Title

* 2. Please describe your "patient experience" with bile duct cancer from perspective of both the patient and caregivers, for example, diagnosis and misdiagnosis, experience of symptoms, impact on participation in family, work, and social life, and access to specialists, care, treatment and support.

Question Title

* 3. There are two types of bile duct cancer.

Intrahepatic bile duct cancers start in the bile ducts found inside the liver
Extrahepatic bile duct cancers grow in the bile ducts outside the liver. 

Which of the following BEST describes the type of bile duct cancer you (or the person you care for) has been diagnosed with?

Question Title

* 4. Bile duct cancer is typically grouped into five stages.  Staging is a way of describing or classifying a cancer based on the extent of cancer in the body.

Stage 0: Precancerous bile duct cancer (non-invasive bile duct cancer)
Stage I – Spread fewer than 5 mm into bile duct wall
Stages IIA and IIB – Spread fewer than 5 mm and into 1-3 lymph nodes OR spread 5-12 mm
Stages IIIA and IIIB: Spread to 4+ lymph nodes OR to large blood vessels carrying blood to abdomen
Stage IV: Spread to other parts of body (liver, lungs, tissues lining abdomen or abdomen organs

Which of the following BEST describes the stage of bile duct cancer you (or the person you care for) experienced at time of diagnosis?

Question Title

* 5. Some persons with bile duct cancer may have tumour gene mutations in their cancer cells. These mutations can be targeted with specific therapies. Three types of are: NTRK fusions, FGFR2 fusions, and IDH1 mutations. These can be diagnosed using a blood or tumour sample.
Which type of tumour gene mutation have you (or the person with cancer whom you care for) been diagnosed with, if any?

Question Title

* 6. Bile duct cancer is typically grouped as resectable or unresectable. This grouping determines the type of treatment used.

Resectable:  Located in an area where it can be removed completely by surgery.
Unresectable metastasized:  Cannot be completely removed by surgery because it has spread to other places in the body
Unresectable recurrent:  After treatment has come back in bile ducts, liver or gallbladder

Which of the following BEST describes the grouping of bile duct cancer you (or the person you care for) has experienced? Check all that apply.

T