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Patients with primary biliary cholangitis expose critical inconsistencies in primary care, citing delayed diagnoses, limited GP awareness, and inconsistent continuity of care.
Primary biliary cholangitis (PBC) is a rare yet relentlessly progressive autoimmune liver disease that necessitates lifelong surveillance and close coordination between specialist services and primary care. As long-term management increasingly unfolds within general practice, the role of the general practitioner (GP) becomes pivotal—shaping diagnostic timeliness, continuity, and overall patient outcomes. Yet the rarity of PBC often places it beyond routine clinical familiarity, creating potential gaps in recognition and sustained support.
In response to these realities, the study aimed to investigate how individuals living with PBC experienced primary care involvement in their disease management, to uncover unmet needs, systemic barriers, and practical opportunities to strengthen service delivery. Researchers executed in-depth, semi-structured interviews with 16 adults diagnosed with PBC across England, Scotland, and Wales. Participants were recruited through an advertisement by a UK-based liver disease support organisation.
The cohort ranged in age from 32 to 76 years, and 12 participants (86%) were female. All participants had a confirmed diagnosis of PBC and were receiving ongoing management from a GP. Interviews explored diagnostic experiences, symptom management, GP engagement, referral pathways, and the broader impact of PBC on daily life. Thematic analysis was applied to distill core patterns and recurring concerns.
Primary care experiences varied markedly. Some participants reported responsive, collaborative GP relationships, while others described limited PBC knowledge, inconsistent follow-up, and inadequate clinical support. Delayed diagnosis was a recurring issue, often attributed to low disease awareness in primary care. Gaps in symptom control, particularly persistent fatigue, were frequently highlighted, alongside fragmented continuity and uncertainty surrounding specialist referral pathways.
Beyond physical management, participants underscored the psychological burden of living with a chronic, progressive liver disease. Trust, clear communication, and shared decision-making with their GP emerged as decisive factors, with stronger therapeutic relationships linked to greater confidence and satisfaction in care. The study illuminated the complex and uneven landscape of primary care involvement in PBC management. Although effective GP–patient partnerships enhanced care quality, variability in knowledge, diagnostic timeliness, and referral coordination introduced avoidable strain.
Strengthening GP education, standardizing referral pathways, and acknowledging both the clinical and psychological burden of PBC were identified as essential priorities. More structured and informed primary care engagement was deemed critical to delivering timely, individualized, and consistently high-quality management for PBC.
Frontline Gastroenterology
Primary biliary cholangitis: the lived experience and its impact on healthcare preferences – a qualitative study
Margaret Corrigan et al.
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