Abstract
Introduction: Patients with liver disease seldom receive palliative care (PC), despite an extensive illness burden. Through considering PC in liver disease from a variety of perspectives, I investigate whether clinical models could be improved through the routine integration of PC and, if so, how.Methods: I used a mixed methods approach to integrate four component studies. An on-line questionnaire study of UK hepatologists examined existing practices and explored the barriers to PC in liver disease. Questionnaire responses were used to purposively select a qualitative sample for semi-structured interviews, which were analysed thematically. The PC needs of patients with liver disease and their carers were explored qualitatively through in-depth interviews of patients with ascites and carers bereaved by liver disease. Interviews were analysed thematically within a single framework. I used generalised linear and logistic regression modelling to examine associations between demographic and healthcare factors (including use of day-case services), and outcomes relating to health-economics (cost, bed days, emergency readmission) and place of death among patients who died from liver disease with ascites in England between 2013-15. I used ‘plan-do-study-act’ quality improvement methodology to design a supportive care intervention for patients with advanced liver disease, alongside development of a poor-prognosis screening tool.
Results: Questionnaire respondents (305/906 – 33.7% response rate) identified lack of routine consideration and a lack of existing clinical models as the key barriers to PC and were more likely to invoke PC for patients with malignancy. Analysis of 10 qualitative interviews with hepatologists demonstrated recognition of extensive unmet PC needs, however identified a myriad of disease-based, structural and attitudinal barriers which frequently made PC ‘inaccessible’. Interviews with 12 patients and five bereaved carers demonstrated that patients’ PC needs were often incompatible with the healthcare services available to address them; these being centred in secondary care and focussed on disease-modification. Analysis of data from 13,818 deaths demonstrated that patients attending a day-case service had associated reductions in cost (-£4,240.29; 95% confidence interval (CI) -£4,829.45, -£3,651.12; p<0.0001), bed days (-16.68 days; 95%CI -18.13, -15.22; p<0.0001), odds of early readmission (odds-ratio (OR) 0.35; 95%CI 0.31-0.40; p<0.0001), and odds of dying in hospital (OR 0.31; 95%CI 0.27,0.34; p<0.0001). Death from hepatocellular carcinoma was also associated with improved outcomes. Following five plan-do-study-act cycles a supportive care intervention and poor prognosis screening tool were developed. Retrospective application of the screening tool demonstrated a positive predictive value of 81.3% for identifying 1-year mortality.
Conclusion: Clinical models for PC in liver disease which maximise use of ambulatory care, routinely assess for poor prognosis, and proactively address PC needs will improve care and are likely to be cost-effective.
| Date of Award | 28 Nov 2019 |
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| Original language | English |
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| Supervisor | Karen Forbes (Supervisor) & Julia Verne (Supervisor) |