What are the lived healthcare experiences of patients with primary sclerosing cholangitis? A community-based qualitative interview study.

ABSTRACT:

Objectives

Primary sclerosing cholangitis (PSC) is a rare chronic disease that presents challenges to both patients and clinicians. This study aimed to explore the experiences of patients with PSC regarding their disease and healthcare.

Design

A series of semi-structured interviews was completed with patients with PSC, including questioning their experiences of living with PSC and its related healthcare.

Setting

Participants were recruited from communities in England, Scotland and Wales, with advertisement via PSC Support (UK disease-specific charity support group).

Participants

18 patients aged between 21 and 72 years were interviewed; 10 were male (56%), and all were of Caucasian ethnicity. Inclusion criteria were as follows: adults, self-identifying as havin

SUBMITTER: Arndtz K 

PROVIDER: S-EPMC11800207 | biostudies-literature | 2025 Feb

REPOSITORIES: biostudies-literature