Primary biliary cholangitis: the lived experience and its impact on healthcare preferences – a qualitative study

Objectives: Primary biliary cholangitis (PBC) is a chronic autoimmune liver disease requiring long-term management in primary care. This study aimed to explore participant perspectives on the role of primary care in managing PBC, including challenges and areas for improvement.

Design: A series of semi-structured interviews were conducted with participants diagnosed with PBC, focusing on their experiences of primary care involvement in disease management.

Setting: Participants were recruited from the community in England, Scotland and Wales through advertisement via a UK-based liver disease support organisation.

Participants: 16 participants were interviewed, aged between 32 and 76 years; 12 were female (86%). Inclusion criteria required participants to have a confirmed diagnosis of PBC and to be receiving ongoing care from a general practitioner (GP) as part of their disease management. Participants with concurrent liver diseases or post-liver transplant status were excluded.

Results: Participants described variable experiences with primary care, with some reporting positive engagement while others highlighted gaps in knowledge and support. Challenges included delays in diagnosis, limited awareness of PBC among primary care providers and a perceived lack of continuity in care. Participants expressed concerns about the adequacy of symptom management, access to specialist referral pathways and the psychological impact of living with a chronic, progressive disease. A strong participant–GP relationship was identified as a key factor in effective management, with a need for improved communication and shared decision-making.

Conclusions: This study highlights the complex role of primary care in managing PBC and the need for enhanced GP education, clearer referral pathways and greater recognition of the disease’s impact on participants. Future work should focus on strategies to improve primary care engagement and ensure timely, individualised management for participants with PBC.