Department of Primary Care and Public Health, Brighton and Sussex Medical School, Brighton, UK.
Research & Development Department, Sussex Partnership NHS Foundation Trust, Brighton, UK.
J Pain Symptom Manage. 2021 Aug;62(2):312-325.e2. doi: 10.1016/j.jpainsymman.2020.12.007. Epub 2020 Dec 19.
Palliative care remains suboptimal in end-stage liver disease (ESLD).
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).
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).
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.
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.
ISRCTN30697116, date assigned: 07/10/2015.
终末期肝病(ESLD)的姑息治疗仍然不尽如人意。
我们报告 REDUCe 研究的定性结果。我们旨在探讨和对比因 ESLD 而出现难治性腹水并随机分配到姑息性长期腹腔引流(LTAD)(允许家庭引流)与大容量腹腔穿刺(LVP)(医院引流)的患者的经验/看法/护理途径。
在一项为期 12 周的可行性随机对照试验中进行同期嵌入式定性研究。进行了电话访谈,记录数据,逐字转录,并使用应用主题分析进行分析,从获得医疗保健的途径方法考虑。收集了定量结果(综合姑息治疗结局量表、简短肝病生活质量量表、EQ-5D-5L、Zarit 负担访谈-12)。
14 名患者(6 名分配到 LTAD,8 名分配到 LVP)和 8 名护士参加了定性研究。LVP 组的患者旅程可能会受到整个护理途径各个环节的挑战,从识别引流的需求到在医院长时间等待引流和/或出院。这些问题也影响到照顾者。相比之下,LTAD 似乎通过消除对医院引流的需求,改变了患者旅程中的所有护理途径。额外的好处包括个性化护理、腹水症状控制改善、在家中以及社区护士的定期支持。护士也对 LTAD 持肯定态度,但表示如果这成为护理标准,他们需要额外的支持。
患者和护士对 ESLD 姑息性 LTAD 的可接受性表示接受,并对这种使家庭护理成为可能的方法表示偏好。进行确定性试验是可行的。
ISRCTN30697116,分配日期:2015 年 10 月 7 日。