Palliative Long-Term Abdominal Drains Versus Large Volume Paracentesis in Refractory Ascites Due to Cirrhosis (REDUCe Study): Qualitative Outcomes

被引:13
|
作者
Cooper, Max [1 ]
Pollard, Alex [1 ,2 ]
Pandey, Aparajita [2 ]
Bremner, Stephen [3 ]
Macken, Lucia [4 ,5 ]
Evans, Catherine J. [6 ,7 ]
Austin, Mark [5 ]
Parnell, Nick [5 ]
Steer, Shani [3 ]
Thomson, Sam [8 ]
Hashim, Ahmed [4 ,5 ]
Mason, Louise [9 ]
Verma, Sumita [4 ,5 ]
机构
[1] Brighton & Sussex Med Sch, Dept Primary Care & Publ Hlth, Brighton, E Sussex, England
[2] Sussex Partnership NHS Fdn Trust, Res & Dev Dept, Brighton, E Sussex, England
[3] Brighton & Sussex Clin Trials Unit, Brighton, E Sussex, England
[4] Brighton & Sussex Med Sch, Dept Clin & Expt Med, Brighton, E Sussex, England
[5] Brighton & Sussex Univ Hosp Trust, Dept Gastroenterol & Hepatol, Brighton, E Sussex, England
[6] Kings Coll London, Cicely Saunders Inst, Dept Palliat Care Policy & Rehabil, London, England
[7] Sussex Community NHS Fdn Trust, Brighton, E Sussex, England
[8] Western Sussex NHS Fdn Trust, Dept Gastroenterol & Hepatol, Worthing, England
[9] Brighton & Sussex Univ Hosp Trust, Dept Palliat Med, Brighton, E Sussex, England
关键词
Palliative care; liver cirrhosis; ascites; community health nursing; STAGE LIVER-DISEASE; OF-LIFE; MALIGNANT ASCITES; CARE; VALIDATION; END; SURVIVAL; MODEL;
D O I
10.1016/j.jpainsymman.2020.12.007
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
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. J Pain Symptom Manage 2021;62:312e325. (c) 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
引用
收藏
页码:312 / +
页数:16
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