Abstract
BACKGROUND:End-stage liver disease (ESLD) is a common cause of morbidity and mortality. However, little is known about the utilisation of intensive care and palliative care towards the end of life among this population.
AIM:
To describe the utilisation of intensive care and palliative care in patients with ESLD towards the end of life, as well as the factors and outcomes associated with the utilisation, to inform future care improvement.
DESIGN:
Nationwide population-based cohort study using the National Health Insurance Research Database (NHIRD) of Taiwan, 2010-2013.
METHODS:
Before the analyses of NHIRD, a systematic review and meta-analysis was completed to determine the symptom prevalence and health-related quality of life of patients with ESLD. A national population-based cross-sectional study using the Office for National Statistics (ONS) death registry was then performed to understand the place of death (a common healthcare outcome) and factors associated with hospital death in patients who died from liver disease including ESLD. The main analyses of the NHIRD were divided into two parts. The first analysis focused on the intensive care utilisation during the terminal hospitalisation of patients with ESLD using a retrospective cohort study design. The second analysis prospectively followed up the utilisation of intensive care and palliative care in patients with ESLD. Time-to-event analyses were applied, and the associations between factors, utilisation, and outcomes were examined.
RESULTS:
The systematic review and meta-analysis included 80 studies. The most frequently reported symptoms were pain (prevalence range 30%–79%), breathlessness (20%–88%), muscle cramps (56%–68%), sleep disturbance (insomnia 26%–77%, daytime sleepiness 29.5%–71%), and psychological symptoms (depression 4.5%–64%, anxiety 14%–45%). The meta-analysis found that decompensation led to significant worsening of both components of the 36-Item Short Form Survey although to a larger degree for the Physical Component Summary score (decrease from average 6.4 [95% confidence interval: 4.0–8.8]) than for the Mental Component Summary score (4.5 [2.4–6.6]). The ONS analysis included 135953 patients who died from liver disease in England from 2001 to 2014. Hospitals were the main place of death (66.9%). After adjusting for sociodemographic factors, patients who died from alcohol-related liver disease or those with four or more comorbidities had the highest chance of hospital death. The high hospital deaths suggested that these patients were at a high risk of receiving intensive care or other aggressive interventions.
The NHIRD retrospective cohort study assessed 14847 adult patients with ESLD during their terminal hospitalisation from 2010 to 2013. It found that the utilisation of intensive care was substantial (overall proportion of intensive care unit [ICU] admission in terminal hospitalisation: 36.9%). Relatively more patients without hepatocellular carcinoma (HCC) were admitted to ICU than those with HCC (59.6% versus 22.3%). Prior palliative care (in the year before terminal hospitalisation) was associated with a lower chance of intensive care utilisation during terminal hospitalisation (adjusted rate ratio 0.38 [0.31–0.47] in ESLD without HCC group; 0.24 [0.21–0.29] in ESLD with HCC group). Those with no comorbid HCC need more attention especially in terms of their palliative care needs, choices regarding intensive care, and their healthcare utilisation.
The NHIRD prospective cohort study followed up 10640 adult patients with newly diagnosed ESLD between 2010 and 2013. More than half of the study population utilised ICU during the follow-up period, but only 4% of them received palliative care. ICU admission was strongly associated with increased mortality in patients with ESLD (adjusted hazard ratio [HR] 5.43 [5.06–5.83]). Other factors which were associated with a higher risk of mortality include old age (HR range: 1.63–2.30), aetiology as alcoholic liver disease (HR range: 1.16–1.30), lower income level, more comorbidities, and complications of ESLD (HR range: 1.28–2.91, except oesophageal variceal bleeding). Palliative care was associated with a markedly reduced likelihood of ICU admission (sub-hazard ratio 0.16, [95% confidence interval: 0.10–0.24]).
CONCLUSIONS:
The symptom prevalence of patients with ESLD resembled that of patients with other advanced conditions. Decompensation led to significant worsening of health-related quality of life. Patients with ESLD have high palliative care need, however, the utilisation of palliative care was low. On the other hand, the utilisation of intensive care was substantial in these patients. Since ICU admission was strongly associated with increased mortality in patients with ESLD, it may be a trigger for palliative care interventions. Palliative care should be incorporated alongside the whole course of treatment and care for patients with ESLD in order to harmonise their quality and quantity of life. The findings from this study provide valuable information for future healthcare improvement in patients with ESLD.
| Date of Award | 1 Jun 2020 |
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| Original language | English |
| Awarding Institution |
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| Supervisor | Wei Gao (Supervisor) & Irene Higginson (Supervisor) |