TY - JOUR
T1 - Palliative Long-Term Abdominal Drains Versus Large Volume Paracentesis in Refractory Ascites Due to Cirrhosis (REDUCe Study)
T2 - Qualitative Outcomes
AU - Cooper, Max
AU - Pollard, Alex
AU - Pandey, Aparajita
AU - Bremner, Stephen
AU - Macken, Lucia
AU - Evans, Catherine J.
AU - Austin, Mark
AU - Parnell, Nick
AU - Steer, Shani
AU - Thomson, Sam
AU - Hashim, Ahmed
AU - Mason, Louise
AU - Verma, Sumita
N1 - Funding Information:
L.Ma. is funded by the National Institute for Health Research (NIHR) and Kent Surrey and Sussex Deanery (KSS), A.H. by the Dunhill Medical Trust, and K.S.S. and C.J.E. by a HEE/NIHR Senior Clinical Lectureship. This manuscript presents independent research funded by the NIHR under its Research for Patient Benefit (RfPB) Program (Grant Reference Number PB-PG-0214–33068 ). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Funding Information:
The authors are indebted to the study participants and caregivers and staff ( Supplementary File 2 ). This study was supported by the United Kingdom Clinical Research Collaboration -registered King's Clinical Trials Unit at King's Health Partners .
Publisher Copyright:
© 2020 American Academy of Hospice and Palliative Medicine
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2020/12/18
Y1 - 2020/12/18
N2 - 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.
AB - 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.
KW - ascites
KW - community health nursing
KW - liver cirrhosis
KW - Palliative care
UR - http://www.scopus.com/inward/record.url?scp=85099842628&partnerID=8YFLogxK
U2 - 10.1016/j.jpainsymman.2020.12.007
DO - 10.1016/j.jpainsymman.2020.12.007
M3 - Article
C2 - 33348031
AN - SCOPUS:85099842628
SN - 0885-3924
JO - Journal of pain and symptom management
JF - Journal of pain and symptom management
ER -
