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Patient-reported and caregiver-reported outcomes in refractory ascites secondary to cirrhosis: A systematic review
Yazan Haddadin1,2, James Ryley2, Benjaman To2
1Brighton and Sussex Liver Research Centre, Department of Clinical and Experimental Medicine, Brighton and Sussex Medical School, University of Brighton and University of Sussex, Brighton, UK.
Background:
Refractory ascites (RA) secondary to advanced chronic liver disease (ACLD) results in poor health-related quality of life (HRQL), high symptom burden, and caregiver workload. Patient/caregiver-reported outcomes (PROs) remain uncharacterized in this cohort. This review summarises the available evidence on this topic.
Methods:
MEDLINE/Embase/Cochrane/PsycINFO/Web of Science/CINAHL were searched for articles that included PROs in RA secondary to ACLD. A structured narrative synthesis and a meta-analysis were undertaken.
Results:
Sixteen articles were included, comprising 1040 patients and 47 caregivers. Fourteen PRO measures were used, most commonly the Short Form-36 (SF-36) and the Chronic Liver Disease Questionnaire (CLDQ). Domain scores were pooled from 4 SF-36 and 3 CLDQ studies. Pooled domain scores were lower than those reported in stable outpatients with cirrhosis in 3/8 SF-36 domains: Social functioning (mean difference -18.8 [95% CI: -30.2 to -7.3]), Mental health (-17.9 [-33.5 to -2.3]), and Physical functioning (-13.6 [-24.5 to -2.7]); and 4/6 CLDQ domains: Abdominal symptoms (-1.5 [-2.3 to -0.7]), Activity (-0.9 [-1.4 to -0.5]), Worry (-1.2 [-2.1 to -0.3]), and Emotional function (-0.7 [-1.3 to -0.1]). Disease-specific tools had broader domain coverage and were more sensitive at picking up impairments in HRQL compared with generic ones. One symptom tool (the Ascites Questionnaire) had been validated in RA. The Short-Form Liver Disease Quality of Life questionnaire (SFLDQoL), the only HRQL measure validated in decompensated ACLD, was used once. Only 2 studies assessed informal caregivers.
Conclusions:
RA in ACLD detrimentally impacts HRQL across multiple domains. However, the lack of validated tools remains a barrier to assessing PROs and conducting well-designed RCTs in this cohort. This review highlights potential domains for the future development of such tools, which could drive equitable, patient-centered care in ACLD.
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