Following our earlier work carried out in collaboration with colleagues based at the British Liver Trust, the Royal Free Sheila Sherlock Liver Unit and the Royal Free Hospital Palliative Care teams, which identified both poor communication between clinicians and patients, and poor delivery of palliative to patients with cirrhosis, our programme of research will focus on the following two areas:
1. Development of Question prompt list (QPL)
Introduction: Both our findings and previous studies (Kimbell et al 2015) have showed the communication difficulties between liver clinicians and patients and family members about liver disease and its prognosis. The use of Question Prompt Lists (QPL), an evidence based list given both to patients and family members prior to their consultation with health professionals, have been promoted as a way of improving communication between the HPs and patients. They are effective in improving patient participation during the consultation and in stimulating discussions about prognosis in advanced cancer (Brandes et al 2014). However, we need to explore their potential use in patients, and families of patients, with chronic liver disease.
Methodology: A literature review will be conducted to identify suitable potential items to include in a QPL for chronic liver disease. Interviews and focus groups will be conducted with people with cirrhosis, their family members and liver clinicians to refine the items and to produce a draft questionnaire. Participants from out-patient liver clinics will be approached to ensure that a variety of liver diseases are covered. Finally the introduction of the QPL among outpatient attenders will be piloted at the Shelia Sherlock Liver Centre (Royal Free Hospital) to assess the acceptability and feasibility of introducing and evaluating a QPL intervention in a clinical setting.
2. Palliative care intervention
There is recognition of the benefits of early palliative care in improving both quality of life and psychological health (Temel et al, 2010). Service initiatives are being developed across the UK such as in Basildon where a shared model of care for patients with liver disease has been developed by the liver team and the palliative care team at the hospital and hospice on site, and in the community, using money received by the Health Foundation. However, evidence is still limited on the effectiveness of early palliative care interventions in people with cirrhosis (Baumann et al 2015).
The Royal Free Sheila Sherlock Liver Unit is currently working collaboratively with the Royal Free Specialist Palliative Care Team in the development of a supportive care intervention for patients with cirrhosis, which will be submitted to the NHS Quality, Innovation, Productivity and Prevention (QIPP) programme. The MCPCRD has agreed to support with the evaluation of this 'service development', which is currently in the process of being developed.
In addition, the MCPCRD are supporting St Luke's Hospice Basildon (working together with Basildon and Thurrock University Hospitals), in the assessment and evaluation of their innovative pilot project, which aims to deliver early palliative care intervention for people with Advanced Liver Disease (ALD). This pilot study promotes early introduction to Hospice services, holistic needs assessment of patients and informal carers, with shared care enabling both groups to access early palliative and supportive care interventions whilst remaining under acute hepatology management. This initiative is funded by the Health Foundation and was awarded the prestigious Hospice UK 'Innovation in Care' award in November 2016. The main role of the MCPCRD is to provide the academic and research support in the evaluation of this highly innovative project.
For more information please contact: Joe Low
|PI: Joe Low||Marie Curie Palliative Care Research Department (MCPCRD), UCL|
|Rachel Craig||Royal Free Hospital palliative care team|
|Sarah Davis||MCPCRD, UCL|
|Anna Gola (health economist)||MCPCRD, UCL|
|Lynda Greenslade||Royal Free Hospital Liver Team|
|Andrew Langford||British Liver Trust|
|Aileen Marshall||Royal Free Hospital Liver Team|
|Paddy Stone||MCPCRD, UCL|
|Doug Thorburn||Royal Free Hospital Liver Team|
|Victoria Vickerstaff (statistician)||MCPCRD, UCL|
|Jo Wilson||Royal Free Hospital palliative care team|