Max Cooper1, Alex Pollard1, Aparajita Pandey2, Stephen Bremner3, Lucia Macken4, Catherine J Evans5, Mark Austin6, Nick Parnell6, Shani Steer6, Sam Thomson7, Ahmed Hashim4, Louise Mason8, Sumita Verma9. 1. Department of Primary Care and Public Health, Brighton and Sussex Medical School, Brighton, UK. 2. Research & Development Department, Sussex Partnership NHS Foundation Trust, Brighton, UK. 3. Brighton and Sussex Clinical Trials Unit, Brighton, UK. 4. Department of Clinical and Experimental Medicine, Brighton and Sussex Medical School, Brighton, UK; Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK. 5. Kings College, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK; Sussex Community NHS Foundation Trust, Brighton, UK. 6. Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK. 7. Department of Gastroenterology and Hepatology, Western Sussex NHS Foundation Trust, Worthing, UK. 8. Department of Palliative Medicine, Brighton and Sussex University Hospitals Trust, Brighton, UK. 9. Department of Clinical and Experimental Medicine, Brighton and Sussex Medical School, Brighton, UK; Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK. Electronic address: s.verma@bsms.ac.uk.
Abstract
CONTEXT: Palliative care remains suboptimal in end-stage liver disease (ESLD). OBJECTIVES: We report qualitative outcomes from the REDUCe study. We aimed to explore and contrast experiences/perceptions/care pathways of patients with refractory ascites due to ESLD randomized to eitherpalliative long-term abdominal drains (LTADs) (allow home drainage) vs. large volume paracentesis (LVP) (hospital drainage). METHODS: Concurrent embedded qualitative study in a 12-week feasibility randomized controlled trial. Telephone interviews were conducted, data being recorded, transcribed verbatim, and analyzed using applied thematic analysis, considered in terms of a pathway approach toward accessing health care. Quantitative outcomes were collected (integrated palliative outcome scale, short-form liver disease quality of life, EQ-5D-5 L, Zarit Burden Interview-12). RESULTS:Fourteen patients (six allocated LTAD and eight LVP) and eight nurses participated in the qualitative study. The patient journey in the LVP group could be hindered by challenges along the entire care pathway, from recognizing the need for drainage to a lengthy wait in hospital for drainage and/or to be discharged. These issues also impacted upon caregivers. In contrast, LTADs appeared to transform this care pathway at all levels across the patient's journey by removing the need for hospital drainage. Additional benefits included personalized care, improved symptom control of ascites, being at home, and regular support from community nurses. Nurses also viewed the LTAD favorably, though expressed the need for additional support should this become standard of care. CONCLUSION: Patients and nurses expressed acceptability of palliative LTAD in ESLD and preference for this approach in enabling care at home. Proceeding to a definitive trial is feasible. TRIAL REGISTRATION: ISRCTN30697116, date assigned: 07/10/2015.
RCT Entities:
CONTEXT: Palliative care remains suboptimal in end-stage liver disease (ESLD). OBJECTIVES: We report qualitative outcomes from the REDUCe study. We aimed to explore and contrast experiences/perceptions/care pathways of patients with refractory ascites due to ESLD randomized to either palliative long-term abdominal drains (LTADs) (allow home drainage) vs. large volume paracentesis (LVP) (hospital drainage). METHODS: Concurrent embedded qualitative study in a 12-week feasibility randomized controlled trial. Telephone interviews were conducted, data being recorded, transcribed verbatim, and analyzed using applied thematic analysis, considered in terms of a pathway approach toward accessing health care. Quantitative outcomes were collected (integrated palliative outcome scale, short-form liver disease quality of life, EQ-5D-5 L, Zarit Burden Interview-12). RESULTS: Fourteen patients (six allocated LTAD and eight LVP) and eight nurses participated in the qualitative study. The patient journey in the LVP group could be hindered by challenges along the entire care pathway, from recognizing the need for drainage to a lengthy wait in hospital for drainage and/or to be discharged. These issues also impacted upon caregivers. In contrast, LTADs appeared to transform this care pathway at all levels across the patient's journey by removing the need for hospital drainage. Additional benefits included personalized care, improved symptom control of ascites, being at home, and regular support from community nurses. Nurses also viewed the LTAD favorably, though expressed the need for additional support should this become standard of care. CONCLUSION:Patients and nurses expressed acceptability of palliative LTAD in ESLD and preference for this approach in enabling care at home. Proceeding to a definitive trial is feasible. TRIAL REGISTRATION: ISRCTN30697116, date assigned: 07/10/2015.