J Pain Symptom Manage. 2020 Dec 18:S0885-3924(20)30943-X. doi: 10.1016/j.jpainsymman.2020.12.007. Online ahead of print.
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 randomised to either palliative long-term abdominal drains (LTAD) (allows home drainage) versus large volume paracentesis LVP) (hospital drainage).
METHODS: Concurrent embedded qualitative study in a 12-week feasibility randomised controlled trial. Telephone interviews were conducted, data being recorded, transcribed verbatim and analysed using applied thematic analysis, considered in terms of a pathway approach towards accessing healthcare. Quantitative outcomes were collected (IPOS, SFLDQoL, EQ-5D-5L, ZBI-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 recognising 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 personalised care, improved symptom control of ascites, being at home and regular support from community nurses. Nurses also viewed the LTAD favourably though expressed the need for additional support should this become standard of care.
CONCLUSIONS: 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.
PMID:33348031 | DOI:10.1016/j.jpainsymman.2020.12.007