Development of a question prompt list for people living with primary biliary cholangitis: a delphi study
Werner, Ellen van Hooff, Maria C B Weijsters, Gemma H X Abbas, Nadir Gerussi, Alessio Willemse, José A Mitchell-Thain, Robert Leburgue, Angela Hirschfield, Gideon M Corpechot, Christophe
Werner, Ellen
van Hooff, Maria C B
Weijsters, Gemma H X
Abbas, Nadir
Gerussi, Alessio
Willemse, José A
Mitchell-Thain, Robert
Leburgue, Angela
Hirschfield, Gideon M
Corpechot, Christophe
Affiliation
Erasmus Medical Center; University of Birmingham; University Hospitals Bimringham NHS Foundation Trust; University of Milano-Bicocca; IRCCS Fondazione San Gerardo dei Tintori; Dutch Liver Patient Association; PBC Foundation; Association pour la Lutte contre les maladies inflammatoires du foie et des voies billiaires; University of Toronto; Sorbonne University; Assistance Publique des Hôpitaux de Paris; University Medical Center Hamburg-Eppendorf; University of Miami School of Medicine; University Hospitals KU Leuven; University of Alberta; General Univeristy Hospital of Larissa; University of Padua; University of Cambridge; Liver Institue Northwest; Newcastle University
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Publication date
2025-04-15
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Abstract
Background and aims: Clinical practice guidelines support caregivers to manage liver diseases. However, people with lifelong conditions often lack guidance to understand what aspects of care are most important and how their disease should be managed. This study aimed to create a question prompt list (QPL) for individuals with primary biliary cholangitis (PBC) including key questions (directed) to their treating physician that are most likely to improve their outcome.
Methods: International PBC professionals including patient representatives rated and ranked questions related to 9 aspects of PBC care. Questions rated by >70% as moderately/very important were considered best candidate questions (BCQs) for the QPL. Results of the survey were discussed during 2 in-person meetings, upon which the questions and/or QPL were amended.
Results: Based on 108 respondents, 11 of 43 questions were considered BCQs. After 2 in-person meetings (64 attendees), the final QPL contained 8 questions and was unanimously approved by 19 members of the study team during the consensus meeting. The included questions referred to the risk of disease progression, presence of cirrhosis, need of second-line therapy, need of repeated liver stiffness measurements, bone health, and availability of patient information and support. Two BCQs addressing options to manage pruritus and fatigue were combined on the QPL. In addition, one question regarding first-line therapy was included despite being rated as moderately/very important by 68.5%.
Conclusions: The PBC patient question prompt list serves as a user-facing document, to enhance the patient experience, and drive value-based healthcare in routine clinical practice.
Citation
Werner E, van Hooff MCB, Weijsters GHX, Abbas N, Gerussi A, Willemse JA, Mitchell-Thain R, Leburgue A, Hirschfield GM, Corpechot C, Schramm C, Levy C, Nevens F, Verbeek J, Mason AL, Dalekos G, Cazzagon N, Mells GF, Kowdley KV, Carbone M, Jones DE, Hansen BE, Trivedi PJ, van der Meer AJ; Global PBC Study Group/ERN RARE-LIVER/Question Prompt List. Development of a Question Prompt List for People Living With Primary Biliary Cholangitis: A Delphi Study. Clin Gastroenterol Hepatol. 2025 Oct;23(11):1935-1942.e5. doi: 10.1016/j.cgh.2025.01.037. Epub 2025 Apr 15.
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Article