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Abstract
Advanced cirrhosis confers a significant symptom burden and has a 50% 2-year mortality rate in those with decompensated disease. There is increasing demand for supportive and palliative care (SAPC) for these patients, yet no consensus on the best model of delivery. It is necessary to identify the needs of such patients and their carers, and evaluate whether they are being met.
A literature search was conducted using key words pertaining to adult patients with liver cirrhosis and their SAPC needs. Study quality was assessed and findings grouped by theme. 51 full texts were selected for inclusion, 8 qualitative studies, 33 quantitative studies, 7 systematic reviews, 2 mixed methods studies and 1 Delphi methods. Key findings were grouped into three main themes: SAPC needs, access to SAPC and models of care.
Patients with cirrhosis have significant psychological and physical symptom burden with many unmet needs. These data failed to identify the best service model of care. The impact of specialist palliative care (SPC) referral was limited by small numbers and late referrals. With the majority of studies conducted in the USA, it is unclear how well these findings translate to other healthcare systems. Comparison between hepatology led services and SPC was limited by inconsistent outcome measures and prevented pooling of data sets. These data also had limited evaluation of patient-reported outcome measures. We propose the development of a core outcome set to ensure consistent and meaningful evaluation of the SAPC needs of patients with advanced non-malignant liver cirrhosis.
- Psychological care
- Supportive care
- Symptoms and symptom management
- Transitional care
- Chronic conditions
Data availability statement
Data are available upon reasonable request. NA.
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Data availability statement
Data are available upon reasonable request. NA.
Footnotes
X @simonnoble
Contributors EH and SN conceived and designed the study. MM, EH and SN contributed to the methods. EH and SN extracted and analysed the data and this was reviewed by AY, MW and CA. EH and SN wrote the first draft of the manuscript. All authors agreed the results and conclusions of the study. All authors contributed to the writing and editing of the final version of the manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests SN holds a personal chair which is funded by a Marie Curie programme grant MCC-FCO-17-C-E.
Provenance and peer review Not commissioned; externally peer reviewed.
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