# 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

## TL;DR

This study found that the pandemic negatively affected the quality of life and care for Canadian patients with primary biliary cholangitis, especially those with delayed treatment.

## Contribution

The study provides new insights into how pandemic-related healthcare changes impacted PBC patients' well-being and care preferences.

## Key findings

- PBC patients with care delays had significantly worse quality of life scores during the pandemic.
- Most patients preferred in-person appointments post-pandemic despite increased use of virtual care.
- PBC patients reported worse quality of life compared to the general population on key metrics.

## 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 post-pandemic. 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.