PSC Symptom Interviews and Measures

We have study goals: (1) To conduct phone interviews to ask about symptoms and life impact from adult patients living with PSC; (2) To lead community advisory board discussions to decide on using existing symptom measures 'as is', modify existing measures or develop new measures to evaluate PSC symptoms; and (3) To conduct interviews with adult patients with PSC to assess their understanding and comprehension of selected symptom measures. We plan to consent and enroll up to 75 patients into a Screening database. From the database, we will select up to 24 patients to interview for Aim 1 and up to 16 patients to interview for Aim 3. Interviews will be conducted over the phone by staff at Duke University. At the end of the study, we will have 3 PSC symptom measures for use in future PSC studies.