Optimizing clinic consultations in primary biliary cholangitis: International consensus recommendations

Background: 

There is variability in primary biliary cholangitis (PBC) care delivery in practice, which can negatively impact disease management and patients’ quality of life. Patient–provider consultations are key to ensure optimal and comprehensive disease management; however, the quality and substance of this interaction may vary. A Delphi study was carried out to provide consensus recommendations to improve and standardize consultations between providers and patients with PBC.

Methods: 

An international survey of 151 healthcare professionals was conducted with input from 9 PBC experts (6 physicians, 1 patient, 1 patient advocate, and 1 nurse practitioner) who formed the Delphi panel. Informed by findings of the survey, the panel used Delphi methodology to develop best practice recommendations with the aim of informing the broader care framework. Consensus was defined as ≥75% agreement among panel members.

Results: 

We identified 15 best practice recommendations across 3 principal areas: “patient–provider discussions at diagnosis/first consultation,” “symptom assessment and ongoing management,” and “wider care and support.” These consensus-based recommendations are a resource for providers to help address patient needs around symptom burden, referrals to specialists other than hepatologists, and connection to patient support organizations.

Conclusion: 

We provide specific recommendations for providers to optimize consultation for patients with PBC with the aim of improving care and patient satisfaction.