Evaluating the clinical care, quality of life and overall experiences of patients with primary biliary cholangitis (PBC) during the pandemic: A Canadian mixed-methods study

Q: What was the study’s main aim for patients with primary biliary cholangitis?

To evaluate how pandemic conditions affected clinical care and patients’ quality of life and overall experiences, including comparisons between groups such as those with care delays.

Q: Which survey tools were used to measure quality of life?

The study used Fear of COVID-19 Scale (FCV-19S), EuroQol 5-dimension 3-level (EQ-5D-3L), and PROMIS-29, alongside a PBC Care Delivery questionnaire.

Q: How did care delays during the pandemic affect outcomes?

Patients reporting care delays had worse quality-of-life scores on FCV-19S, EQ-5D-3L, and PROMIS-29 domains such as fatigue, anxiety, sleep disturbance, and social participation.

Sep 30, 2026

Uploaded by dawugda

Pandemic restrictions impacted healthcare, particularly during the first year. This mixed-methods study assessed the effects of the COVID-19 period on quality of life and clinical care in 348 Canadian patients with primary biliary cholangitis (PBC). It combined quality-of-life surveys (FCV-19S, EQ-5D-3L, PROMIS-29) with a PBC Care Delivery questionnaire, followed by focus groups with patients and stakeholders. Participants’ preferences favored in-person visits after the pandemic.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages14

Reading Time35 min

AccessFree to download

Abstract

Introduction

Methods and outcomes

OPEN ACCESS Citation: Baguley E, Knaub M, VanDyke J, Hirschfield G, Swain MG, Wright G, et al.(2026) Evaluating the clinical care, quality of life and overall experiences of patients with primary biliary cholangitis (PBC) during the pandemic: A Canadian mixed-methods study. PLoS One 21(1): e0340475. [https://doi](https://doi). org/10.1371/journal.pone.0340475 Editor: Olivier Barbier, Laval University, CANADA Received: September 15, 2025 Accepted: December 22, 2025 Published: January 9, 2026 Copyright: © 2026 Baguley et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data availability statement: The data underlying this study include human participant survey and focus-group responses and therefore cannot be publicly shared, even inde-identified form, due to privacy and potential RESEARCH ARTICLE Evaluating the clinical care, quality of life and overall experiences of patients with primary biliary cholangitis (PBC) during the pandemic: A Canadian mixed-methods study Elizabeth Baguley1,2, Madelyn Knaub3, Jessica VanDyke3, Gideon Hirschfield4, Mark G. Swain1, Gail Wright5, Deirdre McCaughey2,3, Abdel Aziz Shaheen1,2* 1 University of Calgary, Division of Gastroenterology and Hepatology, Calgary, Alberta, Canada, 2 University of Calgary, Department of Community Health Sciences, Calgary, Alberta, Canada, 3 University of Calgary, Ward of the 21st Century (W21C), Calgary, Alberta, Canada, 4 Toronto Centre for Liver Disease, Division of Gastroenterology and Hepatology, University of Toronto, Toronto, Ontario, Canada, 5 Canadian PBC Society, Toronto, Ontario, Canada * aashahee@ucalgary.ca Abstract Pandemic restrictions impacted healthcare, particularly during the first year. We evaluated the impact of the pandemic on quality of life and clinical care among patients with primary biliary cholangitis (PBC) . This mixed-methods study administered quality of life surveys (Fear of COVID-19 Scale [FCV-19S], EuroQol 5-dimension 3-level [EQ-5D-3L], 29-item Patient-Reported Outcomes Measurement Instrument Survey [PROMIS-29]) and a PBC Care Delivery questionnaire to 348 Canadian PBC patients, followed by two focus groups with patients (n = 14) and stakeholders (n = 3) . Quality of life scores were compared among sub-groups (i.e. , care delays and pandemic appointment type) and with various reference populations. Most participants were female (94 .0%) and Caucasian (88 .2%), with a median age of 63.0 years (IQR: 55.9–71.2) . During the pandemic, 75.8% had the majority (≥ 50%) of their hepatologist appointments virtually, but only 22.4% preferred to continue with virtual care post-pandemic. Participants with care delays had worse scores on the FCV-19S (p = 0.014), EQ-5D-3L (p = 0.009), and PROMIS-29 (i.e. , fatigue, anxiety, sleep disturbance, ability to participate in social roles and activities, p < 0.01), compared to those without care delays. PBC patients had worse PROMIS-29 scores compared to a general population (p < 0.01) . Both patients and stakeholders stressed the importance of in-person appointments, while recognizing a role for virtual appointments postpandemic. PBC patients’ quality of life worsened during the pandemic, especially those with delayed care. Most PBC patients expressed a preference for in-person appointments post-pandemic. PLOS One | [https://doi.org/10.1371/journal.pone.0340475](https://doi.org/10.1371/journal.pone.0340475) January 9, 2026 1 / 14 re-identification risk. These restrictions are imposed by the University of Calgary Conjoint Health Research Ethics Board (CHREB) under the study’s ethics approval conditions. Data are available upon reasonable request and subject to CHREB approval; requests can be directed tochreb@ucalgary.ca. Funding: This work was supported by generous grant from the

FAQs

What was the study’s main aim for patients with primary biliary cholangitis?

To evaluate how pandemic conditions affected clinical care and patients’ quality of life and overall experiences, including comparisons between groups such as those with care delays.

Which survey tools were used to measure quality of life?

The study used Fear of COVID-19 Scale (FCV-19S), EuroQol 5-dimension 3-level (EQ-5D-3L), and PROMIS-29, alongside a PBC Care Delivery questionnaire.

How did care delays during the pandemic affect outcomes?

Patients reporting care delays had worse quality-of-life scores on FCV-19S, EQ-5D-3L, and PROMIS-29 domains such as fatigue, anxiety, sleep disturbance, and social participation.

Sep 30, 2026

Uploaded by dawugda