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PBC Patient Survey 2026
ABOUT YOU
*
1.
What is your age group?
(Required.)
18-30
31-45
46-60
61-75
Over 75
*
2.
What was your sex assigned at birth?
(Required.)
Male
Female
Intersex
Prefer not to disclose
3.
What is your ethnicity?
White/European
Indigenous (Inuit, First Nations, Metis)
Black/African/Caribbean
Southeast Asian (e.g., Chinese, Japanese, Korean, Vietnamese, Cambodian, Filipino, etc.)
Arab (e.g., Saudi Arabian, Palestinian, Iraqi, etc.)
South Asian (e.g., East Indian, Sri Lankan, etc)
Latin American (e.g., Costa Rican, Guatemalan, Brazilian, Colombian, etc.)
West Asian (e.g., Iranian, Afghani, etc.)
Prefer not to say
Other (please specify)
*
4.
When were you diagnosed with PBC?
(Required.)
Before 2000
Between 2000 and 2015
Between 2016 and 2023
2024 or later
*
5.
What was your age at the time of your PBC diagnosis?
(Required.)
*
6.
What is your postal code/zip code? (
this information is used to help identify regional differences in PBC patients' experiences)
(Required.)
*
7.
What is your current work status?
(Required.)
Work full-time
Work part-time
On disability
Retired
Other (please specify)
*
8.
In addition to PBC, have you been diagnosed with any of the following? Select all that apply.
(Required.)
Thyroid disease
Sjogren's syndrome
Osteoporosis
Rheumatoid arthritis
Scleroderma
Celiac disease
Depression or Anxiety
Digestive disorder
Other (please specify)
None of the above
*
9.
Have you had a liver transplant?
(Required.)
No
Yes, specify the year of your transplant
MANAGING YOUR PBC
*
10.
What
PBC medications
have you taken in the last 12 months?
(Required.)
Ursodeoxycholic Acid (URS0)
Obeticholic Acid (OCALIVA)
Fibrate/Bezafibrate
Elafibranor (IQIRVO)
Seladelpar (LYVDELZI)
Other (please specify)
*
11.
Since initiating your current treatments, have you seen improvements in your
PBC lab tests
?
(Required.)
Yes
No
Uncertain
Provide more details
*
12.
Since initiating your current treatments, have you seen improvements in your
PBC symptoms
?
(Required.)
Yes
No
Uncertain
Provide more details
13.
What improvements would you like to see for new treatments that are not achieved with currently available treatments?
*
14.
Are you currently participating in a PBC clinical trial?
(Required.)
Yes
No
Don't know
15.
Who is monitoring your PBC?
PBC Specialist (e.g. a hepatologist or a GI with special interest in PBC)
Gastroenterologist
Family Doctor
Other (please specify)
16.
How often do you see the physician who is monitoring your PBC?
Every 12 months
Every 6 months
Every 3 months
Other (please specify)
LIVING WITH PBC
*
17.
In the past 12 months have you experienced any of the following?
(Required.)
Never
Rarely
Sometimes
Often
Fatigue
Never
Rarely
Sometimes
Often
Itching
Never
Rarely
Sometimes
Often
Brain Fog
Never
Rarely
Sometimes
Often
Dry eyes, dry mouth
Never
Rarely
Sometimes
Often
Abdominal pain
Never
Rarely
Sometimes
Often
Joint pain
Never
Rarely
Sometimes
Often
Ascites
Never
Rarely
Sometimes
Often
Jaundice
Never
Rarely
Sometimes
Often
*
18.
In the past 12 months how well have your
PBC symptoms
been managed?
(Required.)
Not at all managed
Poorly managed
Moderately managed
Well managed
Not Applicable
Fatigue
Not at all managed
Poorly managed
Moderately managed
Well managed
Not Applicable
Itching
Not at all managed
Poorly managed
Moderately managed
Well managed
Not Applicable
Dry eyes, dry mouth
Not at all managed
Poorly managed
Moderately managed
Well managed
Not Applicable
Abdominal pain
Not at all managed
Poorly managed
Moderately managed
Well managed
Not Applicable
Joint pain
Not at all managed
Poorly managed
Moderately managed
Well managed
Not Applicable
Brain Fog
Not at all managed
Poorly managed
Moderately managed
Well managed
Not Applicable
Ascites
Not at all managed
Poorly managed
Moderately managed
Well managed
Not Applicable
Jaundice
Not at all managed
Poorly managed
Moderately managed
Well managed
Not Applicable
*
19.
In the past 12 months, rate the impact of PBC on your life.
(Required.)
No impact
Minor impact
Some impact
Severe impact
Physical well-being (e.g. ability to perform daily activities)
No impact
Minor impact
Some impact
Severe impact
Emotional well-being (e.g. feelings of anxiety, depression)
No impact
Minor impact
Some impact
Severe impact
Social Interactions (e.g. ability to maintain relationships, participate in social activities)
No impact
Minor impact
Some impact
Severe impact
Overall quality of life
No impact
Minor impact
Some impact
Severe impact
*
20.
In the past 12 months have you depended on someone (a family member, friend or caregiver) to help you with the following activities?
(Required.)
Shopping for groceries
Cooking a meal
Bathing/Dressing
Cleaning of home
Other (please specify)
None of the above
*
21.
In the past 12 months have you planned to attend a work, social or family function, meeting or event but had to cancel due to PBC-related symptoms?
(Required.)
Yes
No
*
22.
In the past 12 months have you missed work due to PBC?
(Required.)
Yes
No
Not applicable
*
23.
In the past 12 months have you felt comfortable telling friends and family that you have PBC?
(Required.)
Yes
No
Not applicable
Comment
24.
In 200 words or less, describe what it is like to live with PBC.
