Palliative care for people with advanced liver disease: a feasibility trial of a supportive care liver nurse specialist

Barbara Kimbell, Scott Murray, Heidi Byrne, Andrea Baird, Peter C. Hayes, Alastair MacGilchrist, Anne Finucane, Patricia Brookes-Young, Ronan O'Carroll, Christopher J. Weir, Marilyn Kendall, Kirsty Boyd

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Liver disease is an increasing cause of death worldwide but palliative care is largely absent for these patients.
Aim: We conducted a feasibility trial of a complex intervention delivered by a supportive care liver nurse specialist to improve care
coordination, anticipatory care planning and quality of life for people with advanced liver disease and their carers.
Design: Patients received a 6-month intervention (alongside usual care) from a specially trained liver nurse specialist. The nurse
supported patients/carers to live as well as possible with the condition and acted as a resource to facilitate care by community
professionals. A mixed-method evaluation was conducted. Case note analysis and questionnaires examined resource use, care
planning processes and quality-of-life outcomes over time. Interviews with patients, carers and professionals explored acceptability,
effectiveness, feasibility and the intervention.
Setting/participants: Patients with advanced liver disease who had an unplanned hospital admission with decompensated cirrhosis
were recruited from an inpatient liver unit. The intervention was delivered to patients once they had returned home.
Results: We recruited 47 patients, 27 family carers and 13 case-linked professionals. The intervention was acceptable to all
participants. They welcomed access to additional expert advice, support and continuity of care. The intervention greatly increased the
number of electronic summary care plans shared by primary care and hospitals. The Palliative care Outcome Scale and EuroQol-5D-
5L questionnaire were suitable outcome measurement tools.
Conclusion: This nurse-led intervention proved acceptable and feasible. We have refined the recruitment processes and outcome
measures for a future randomised controlled trial.
Original languageEnglish
Pages (from-to)1-11
JournalPalliative Medicine
Early online date8 Mar 2018
DOIs
Publication statusE-pub ahead of print - 8 Mar 2018

Keywords / Materials (for Non-textual outputs)

  • liver failure
  • palliative care
  • supportive care
  • care planning
  • nurse specialist
  • feasibility trial
  • generalist palliative care

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