Evolving strategies to diagnose and manage autoimmune liver disease

Arndtz, Katherine Johanna ORCID: 0000-0002-5049-8893 (2022). Evolving strategies to diagnose and manage autoimmune liver disease. University of Birmingham. M.D.

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Background: Primary Sclerosing Cholangitis (PSC) is a rare immune-meditated liver disease characterised by progressive destruction of bile ducts. This leads to cholestasis, biliary strictures, cirrhosis and hepatobiliary malignancy. PSC has an unpredictable prognosis, no proven treatment and overall poor long-term outcomes. While rare, the impact of PSC is high, with a large symptom burden and the need for management in specialist centres for most patients.

Aims: This thesis aims to improve the understanding of PSC, from the perspective of patients, clinicians and healthcare providers. It aims to identify the barriers that PSC patients experience to their optimal medical management and explore the potential utility of two evolving technologies to improve patient experiences of their healthcare. These technologies are telemedicine and quantitative multiparametric MRI imaging.

Methods: Four complementary studies were designed, using both quantitative and qualitative research methods. These studies included a 10-year retrospective cohort study into PSC at a large tertiary centre, semi-structured qualitative interviews with PSC patients recruited nationally, a questionnaire into the personal burden of medical intervention for PSC and attitudes to telemedicine, and a large observational trial of the utility of quantitative MRI techniques in PSC and related autoimmune disorders. These studies are initially discussed individually and are then combined in the final discussion chapter to provide an overall view of PSC patient and healthcare experiences.

Results: All studies confirmed the large burden that PSC poses to patients and healthcare providers, along with the need for advances in new treatments and risk stratification methods. Particular challenges highlighted by patients were difficulties accessing knowledgeable medical care and how to overcome the uncertainties that PSC presented to them, both in terms of daily life but also long-term prognosis. Interest in telemedicine as one method to bypass traditional geographic barriers in accessing specialist care was high. However, hidden complexities within chronic illness behaviour, especially a particularly fragile doctor-patient relationship identified in this thesis, meant that telemedicine would not be universally accepted. Investigation into the utility of quantitative MRI technology observed correlations with existing markers of disease activity and severity, and demonstrated the ability to predict some clinically significant events. Although this was no better than existing serum biochemistry, the potential of this technology for future risk-stratification is confirmed.

Conclusions: This thesis adds to the published literature of the ongoing high burden of PSC with particular added value from in-depth discussions with patients themselves. This has identified multiple areas of concern that should become priorities for further work, including the need for improved risk stratification tools to allow individualised management and prognostication, as well as improving access to specialist care. While telemedicine and new imaging technology may have future utility for patient benefit, both need further research in order to better understand their impact and utility in real-life clinical situations. PSC continues to present a challenge to patients and clinicians alike.

Type of Work: Thesis (Doctorates > M.D.)
Award Type: Doctorates > M.D.
Hirschfield, Gideon MUNSPECIFIEDorcid.org/0000-0002-6736-2255
Licence: All rights reserved
College/Faculty: Colleges (2008 onwards) > College of Medical & Dental Sciences
School or Department: Institute of Immunology and Immunotherapy
Funders: National Institute for Health Research
Subjects: R Medicine > RC Internal medicine
URI: http://etheses.bham.ac.uk/id/eprint/13036


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