Mental health and quality of life in patients with chronic liver disease: a single-center structural equation model.

BACKGROUND: Chronic liver disease (CLD) is one of the leading disease burdens in Pakistan. Until now, there has only been limited focus in the country on providing health services through tertiary services in urban cities, whereas there is almost no research in Pakistan on the mental health and quality of life of CLD patients. This study aimed to understand which predictors influence the mental health and quality of life of CLD patients in order to advise better policy protection. METHODS: Data was collected from CLD patients at the Pakistan Kidney and Liver Institute and Research Centre, Lahore, Pakistan. A total of 850 respondents were part of the final sample. The age of respondents ranged from 18 to 79 years and included the following diagnosis: (i) Chronic Viral Hepatitis (n = 271), (ii) Cirrhosis (n = 259), (iii) Hepatocellular Carcinoma (n = 193), and (iv) Non-viral Liver Disease (n = 127). RESULTS: Mean results reveal that females as well as illiterate patients need more support for mental health and communication with their physician; whereas men need more support to develop coping strategies. Structural equation modelling results reveal that the severity of symptoms (ß = 0.24, p < 0.001), coping strategies (ß=-0.51, p < 0.001), and doctor communication (ß=-0.35, p < 0.001) predict mental health. Quality of life is associated with the severity of symptoms (ß=-0.36, p < 0.001), coping strategies (ß = 0.26, p < 0.05), and doctor communication (ß = 0.09, p < 0.05). CONCLUSIONS: A 'bio-psycho-social-spiritual' model is recommended for Pakistan's CLD patients which includes the integration of social officers to provide support in four key areas to secure mental health and quality of life of patients.

Patient perspectives and overall satisfaction after liver resection for benign disease.

BACKGROUND: Management of benign liver lesions (BLLs) is still an object of discussion. Frequently, patients receive multiple opinions about their diagnosis and treatment from physicians specialized in different areas, which can be opposite and controversial. This study aimed to understand patients' decision-making process in electing surgery and assess their satisfaction after resection for BLLs. METHODS: A 104-question survey was administered to 98 patients who had a resection for BLLs in 4 different hepatopancreatobiliary and transplant centers in Argentina. The first section included 64 questions regarding the initial discovery of the BLL, the decision-making process, and the understanding of the patient's feelings after surgery. The second section, 42 queries, referred to the quality of life. The patient's final diagnosis and outcome were correlated with the survey results using univariate analysis. RESULTS: Among 97 patients who had undergone liver resection for BLLs, 69 (70%) completed the survey. The median age was 51.71 years (range, 18-75), and 63% of the patients were females. Moreover, 21% of patients received conflicting information from different healthcare providers. Surgeons were the best to describe the BLL to the patient (63%), and 30% of patients obtained opinions from multiple surgeons. The respondents were quite or fully satisfied with their decision to have surgery (90%) and the decision-making process (91%). Only 59% of patients considered their lifestyle better after surgery, and 89% of patients would have retaken the same decision. CONCLUSION: Patients with resected BLLs are delighted with the decision to have surgery, regardless of the final diagnosis and outcome. The role of surgeons is crucial in the decision-making process.

GDS score as screening tool to assess the risk of impact of chronic conditions and depression on quality of life in hospitalized elderly patients in internal medicine wards.

ABSTRACT: Aging of population is characterized by multiple chronic conditions in the same individual. Health-related quality of life (HR-QOL) reflects the multidimensional impact of chronic disease on population and it is increasingly analysed as outcomes.The aim of this study was the evaluation of the predictors of quality of life among elderly patients hospitalized in internal medicine ward, investigating the effect of comorbidities on health-related quality of life.Data collected in this cross-sectional study were analysed. Socio-demographic, clinical characteristics, disease distribution and quality of life by the 12-Item Short Form Health Survey (SF-12) were evaluated.Of 240 inpatients, subjects with Barthel Index (BI)≤40 were 23.7%, 55% had a Geriatric Depression Scale (GDS)≥2. After categorizing mental component score (MCS) and physical component score (PCS) in five classes, we found that diabetics and patients with cancer were more frequent in the first class of MCS while patients with NYHA III-IV are significantly more frequent in the first class of PCS. When we classified patients according to GDS≥2 or < 2, subjects with GDS≥2 had BI and MCS significantly lower. In the multivariate analysis GDS score ≥2 was independently associated with first MCS class [16.32 (3.77-70.68)] while NYHA III-IV class and claudicatio intermittents were strong predictors of the worst PCS class [9.54 (1.97-47.40), 2.53 (1.16-5.49), respectively]. Liver disease was independently associated with GDS≥2 [5.26 (1.13-24.39)].Our study highlighted the impact of chronic diseases on health-related quality of life in elderly subjects hospitalized in an internal medicine ward pointing out the importance of taking into account patient's needs and perception and the setting up of a personalised health-care. Patients with diabetes and liver disease along with persons affected by cancer need psychological support to improve their quality of life. A GDS score ≥ 2 is a strong predictor of poor quality of life and should trigger an in-depth assessment of mental health in this kind of patients.

Post-liver transplant outcomes in patients with major psychiatric diagnosis in the United States.

INTRODUCTION AND OBJECTIVES: Higher rates of psychiatric disorders are reported among cirrhotic patients. This study examines the demographic and clinical outcomes post-liver transplant (LT) among cirrhotic patients with a major psychiatric diagnosis (cases) compared to those without psychiatric diagnosis (controls). MATERIALS AND METHODS: Retrospective case control design was used among 189 cirrhotic patients who had undergone LT at Methodist University Hospital Transplant Institute, Memphis, TN between January 2006 and December 2014. Multivariable regression and Cox proportional hazard regression were conducted to compare allograft loss and all-cause mortality. RESULTS: The study sample consisted of a matched cohort of 95 cases and 94 controls with LT. Females and those with Hepatic Encephalopathy (HE) were more likely to have psychiatric diagnosis. Patients with hepatocellular carcinoma (HCC) were twice as likely to have allograft loss. Psychiatric patients with HCC had two and a half times (HR 2.54; 95% CI: 1.20-5.37; p = 0.015) likelihood of all-cause mortality. Data censored at 1-year post-LT revealed that patients with psychiatric diagnosis have a three to four times higher hazard for allograft loss and all-cause mortality compared to controls after adjusting for covariates, whereas when the data is censored at 5 year, allograft loss and all-cause mortality have two times higher hazard ratio. CONCLUSIONS: The Cox proportional hazard regression analysis of censored data at 1 and 5 year indicate higher allograft loss and all-cause mortality among LT patients with psychiatric diagnosis. Patients with well-controlled psychiatric disorders who undergo LT need close monitoring and medication adherence.

Health-related quality of life in Cuban patients with chronic liver disease: A real-world experience.

INTRODUCTION AND OBJECTIVES: Patient-reported outcomes (PROs) are important for comprehensive assessment of chronic liver disease (CLD). Latin America and the Caribbean have a high burden of CLD, but PROs are lacking. We assessed health-related quality of life (HRQL) in Cuban patients with compensated CLD. MATERIALS AND METHODS: A cross sectional study performed of adult patients with a diagnosis of chronic viral infection B and C (HBV, HCV), non-alcoholic fatty liver diseases (NAFLD) and autoimmune liver diseases (AILD) including autoimmune hepatitis (AIH), primary biliary cholangitis (PBC) and overlap syndrome (AIH+PBC). PROs were collected using: Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F), Work Productivity and Activity-Specific Health Problem (WPAI: SHP), and the Chronic Liver Disease Questionnaire (CLDQ)-disease-specific. RESULTS: 543 patients enrolled, n=91 (HBV), n=188 (HCV), n=221 (NAFLD), n=43 (AILD). Of those with AILD, 22 had AIH, 14 PBC, and 7 overlap AIH/PBC. Mean age was 53.5 years, 64.1% female, 69.2% white, and 58.0% employed. Patients with HCV and AILD had more severe liver disease. A significant impairment in PROs was observed in HCV group whereas the AILD patients had more activity impairment. CLDQ-HRQL scores were significantly lower for patients with NAFLD and AILD compared to HBV. Male gender and exercising ≥90min/week predicted better HRQL. The strongest independent predictors of HRQL impairment were fatigue, abdominal pain, anxiety, and depression (p<0.05). CONCLUSIONS: HRQL for Cuban patients with compensated CLD differs according to the CLD etiology. Patients with HCV and AILD had the worst PRO scores most likely related to severe underlying liver disease and/or extrahepatic manifestations.

Symptom relief and quality of life after combined partial hepatectomy and cyst fenestration in highly symptomatic polycystic liver disease.

BACKGROUND: Polycystic liver disease can cause severe symptomatic hepatomegaly. Combined partial hepatectomy and cyst fenestration can be performed to reduce liver volume and symptom burden. We aimed to assess change in symptom relief and quality of life 6 months after partial hepatectomy and cyst fenestration in polycystic liver disease patients. METHOD: We established a prospective cohort between 2014 and 2018 at a referral center in the United States. Patients who underwent partial hepatectomy and cyst fenestration for volume-related symptoms were included. Primary outcome was change in polycystic liver disease-related symptoms, measured with Polycystic Liver Disease Questionnaire. Secondary outcomes were change in liver volume (computed tomography/ magnetic resonance imaging) and change in quality of life, measured with the 12-Item Short Form Survey and the EuroQoL Visual Analogue Scale. Questionnaire scores range from 0 to 100 and were assessed before and 6 months after partial hepatectomy and cyst fenestration. Surgical complications were scored according to Clavien-Dindo (grade 1 to 5). RESULTS: We included 18 patients (mean age 52 years, 82% female). Partial hepatectomy and cyst fenestration reduced median liver volume (4,917 to 2,120 mL). Symptoms, measured with Polycystic Liver Disease Questionnaire, decreased (76.9 to 34.8 points; P < .001) 6 months after surgery; 15/16 symptoms declined after treatment, with the most impact seen on early satiety and dyspnea. Quality of life also improved after surgery: median physical and mental component scales of the 12-Item Short Form Survey and EuroQoL Visual Analog Scale increased (24.9 to 45.7, P = .004; 40.5 to 55.4, P = .02; and 40.0 to 72.5, P = .003). Major complications (grade 4) occurred in 2 patients. There was no procedure-related mortality. CONCLUSION: Partial hepatectomy and cyst fenestration substantially improves symptom burden and quality of life in highly symptomatic polycystic liver disease patients.

High incidence of hepatocellular carcinoma and cirrhotic complications in patients with psychiatric illness: a territory-wide cohort study.

BACKGROUND: Because of high-risk behaviours, sedentary lifestyle and side effects of medications, psychiatric patients are at risk of viral hepatitis, alcohol-related liver disease and non-alcoholic fatty liver disease. We aimed to study the incidence of hepatocellular carcinoma (HCC) and cirrhotic complications in psychiatric patients. METHODS: We identified consecutive adult patients in all public hospitals and clinics in Hong Kong with psychiatric diagnoses between year 2003 and 2007 using the Clinical Data Analysis and Reporting System, which represents in-patient and out-patient data of approximately 80% of the 7.4-million local population. The patients were followed for liver-related events (HCC and cirrhotic complications) and deaths until December 2017. Age- and sex-standardized incidence ratio (SIR) of HCC in psychiatric patients to the general population was estimated by Poisson model. RESULTS: We included 105,763 psychiatric patients without prior liver-related events in the final analysis. During a median (interquartile range) follow-up of 12.4 (11.0-13.7) years, 1461 (1.4%) patients developed liver-related events; 472 (0.4%) patients developed HCC. Compared with the general population, psychiatric patients had increased incidence of HCC (SIR 1.42, 95% confidence interval [CI] 1.28-1.57, P < 0.001). The SIR was highest in patients with drug-induced (SIR 3.18, 95% CI 2.41-4.11, P < 0.001) and alcohol-induced mental disorders (SIR 2.98, 95% CI 2.30-3.81, P < 0.001), but was also increased in patients with psychotic disorders (SIR 1.39, 95% CI 1.16-1.65, P < 0.001) and mood disorders (SIR 1.16, 95% CI 1.00-1.34, P = 0.047). Liver disease was the fifth most common cause of death in this population, accounting for 595 of 10,614 (5.6%) deaths. Importantly, 569 (38.9%) patients were not known to have liver diseases at the time of liver-related events. The median age at HCC diagnosis (61 [range 26-83] years) was older and the median overall survival (8.0 [95% CI 5.0-10.9] months) after HCC diagnosis was shorter in this cohort of psychiatric patients than other reports from Hong Kong. CONCLUSIONS: HCC, cirrhotic complications, and liver-related deaths are common in psychiatric patients, but liver diseases are often undiagnosed. More efforts are needed to identify liver diseases in the psychiatric population so that treatments and screening for HCC and varices can be provided to patients in need.

Prevalence of Covert Hepatic Encephalopathy in A Tertiary Care Centre.

INTRODUCTION: Among patients with Hepatic Encephalopathy, prevalence of Minimal HE varies between 30-50%. Identifying patients with MHE has been shown to improve with medications and delay development of Overt HE, however only limited clinicians screen for MHE in patients due to time consuming neuropsychological and neurophysiological tests. The Number Connection Test is an easy way to evaluate patients to diagnose MHE. The aim of this study is to find out the prevalence of covert hepatic encephalopathy. METHODS: The descriptive cross-sectional study was done to find out the prevalence of covert hepatic encephalopathy among patients with chronic liver disease. To diagnose Covert HE which included MHE as well, NCT was used in Devanagari script. RESULTS: The prevalence of covert hepatic encephalopathy is found to be 56 (58.3%) at 90% confidence interval (58.23-58.37%). A total of 96 patients (71.9% male) were diagnosed as HE, with mean age of 49.6+11.8 years. The cause of CLD in 85 (88.5%) of these patients was alcohol, of which 76 (79.2%) consumed locally brewed alcohol. Of these 96 patients with HE, only 40 (41.7%) had overt HE. Among all these, maximum patients had MHE (37.5%). CONCLUSIONS: Our study showed that although the prevalence of minimal HE is quite high among cirrhotics, they are usually missed in clinical practice due to absence of symptoms. Active screening with easy-to-administer tests, like Number Connection tests, can help identify patients with minimal HE and hence treat them early.

A systematic review and meta-analysis on the quality of life after hepatic resection.

BACKGROUND: Quality of life (QoL) after hepatic resection is a pertinent issue that has been poorly studied. The aim of this study was to compare changes in QoL before and after hepatic resection. METHODS: A systematic review was performed using Medline, EMBASE, and the Cochrane library. Whenever possible, pooled mean differences of survey scores pre- and post-operatively were calculated. RESULTS: 22 studies were included comprising a total of 1785 participants. Using the EORTC-QLQ 30C survey, patients with benign disease tend to have better QoL post-surgery than those with malignant disease. There were post-operative improvements in the following FACT-HEP domains: physical at 9 months (MD 3.14, 95%CI 2.70 to 3.58, P < 0.001), social and family at 3 (MD 1.45, 95%CI 0.12 to 2.77, p = 0.030), 6 (MD 1.12, 95%CI 0.21 to 2.04, p = 0.020), 9 (MD 0.66, 95%CI 0.03 to 1.28, p = 0.040), and 12 (MD 0.58, 95%CI 0.12 to 1.03, p = 0.010) months, emotional at 9 (P < 0.001) and 24 months (P < 0.001), hepatobiliary at 24 months (p < 0.001), and global health status at 9 months (p = 0.002). CONCLUSION: QoL scores tend to deteriorate post-surgery, but recover to baseline in the long-term at 9-months. Patients with malignant disease, and those who underwent major hepatectomy, have poorer QoL scores.

Surgical treatment for non-parasitic liver cysts improves quality of life.

BACKGROUND&PURPOSE: Liver cysts occur frequently. Most are harmless, however some carry a significant patient burden. Optimizing treatment strategy is complicated as needs differ between patients. The current study assesses the effect of surgery on quality of life (QoL) of patients with non-parasitic liver cysts. METHODS: A retrospective cohort study of all patients who underwent surgery for non-parasitic liver cysts in three major Dutch medical centers from 1993 to 2017. Patient characteristics and surgery related variables were collected from the electronic patient file. QoL was measured before and after surgery using the EORTC QLQ-C30. Summary scores (SumSc) were calculated and compared to reference values of the general population. Multivariate analysis using logistic regression was performed for identifying outcome related factors. Increase of ≥ 10% in SumSc was defined as clinically relevant. MAIN FINDINGS: Eighty-eight of 132 eligible patients (67%) completed two QoL assessments. Respondents demonstrated significant improvement in the global health status, on all 5 functional scales (all p ≤ 0.005), on all 9 symptom scales after surgery (all p < 0.05), and on SumSc (p < 0.001) to levels similar or better than the general population. Patients with complications demonstrated a significant QoL gain (p < 0.05), and reported a similar postoperative status compared to patients without complications (p = 0.74). QoL gain for patients who underwent open and laparoscopic cyst fenestration were similar (p = 0.08). Multivariate analysis of SumSc found mechanical complaints as significant factor for ≥ 10% SumSc increase (OR 0.11, 95% CI (0.02-0.55). CONCLUSIONS: Surgery is a safe and effective strategy to significantly improve QoL in patients with symptomatic liver cysts.

Predictors of quality of life for families of children and adolescents with severe physical illnesses who are receiving hospital-based care.

AIM: There is strong evidence regarding the impact of medical treatments on hospitalised children and their families after being diagnosed with a serious illness. Even though survival rates have increased for children and adolescents with illnesses such as cancer, kidney, liver and gastrointestinal diseases, lengthy medical procedures and symptom management may have an impact on the well-being and quality of life for families. Little is known, however, about promoting family quality of life in hospital-based paediatric settings. The main purpose of this study was to evaluate the predictors of quality of life (QOL) across physical health conditions among families of children and adolescents with cancer, kidney, liver and gastrointestinal diseases. Further, to evaluate the difference in perception on QOL among families of children with cancer compared to families of children with kidney, liver and gastrointestinal diseases. METHOD: The study design was cross-sectional. Thirty-eight families of children with cancer, kidney, liver or gastrointestinal diseases participated at a University Hospital. Data were collected using valid and reliable instruments to measure the study variables from March 2015 to May 2016. FINDINGS: The main result from the stepwise regression analysis indicated perceived family support and illness beliefs, significantly predicted quality of life of the family; approximately 41% of the variance in the families' perception of their quality of life was explained by the model. CONCLUSIONS: The findings emphasise the importance of supporting and maintaining quality of life for families of children with physical illnesses. RELEVANCE TO CLINICAL PRACTICE: Family level interventions within the healthcare system are needed for families of children with severe physical illnesses, since that can result in better outcomes for the child or adolescent and their family. Such an intervention would need to emphasise therapeutic conversations within a relational context, highlighting illness management, illness beliefs, and cognitive and emotional family support.

Relationship between pre-sarcopenia and quality of life in patients with chronic liver disease: a cross-sectional study.

AIM: This study aimed to clarify the relationship between pre-sarcopenia (PS) and quality of life (QOL) in patients with chronic liver disease (CLD). PATIENTS AND METHODS: This cross-sectional study evaluated 335 patients with CLD. PS was diagnosed on the basis of the assessment criteria by the Japan Society of Hepatology. QOL was evaluated using the short form-36. RESULTS: Patients' mean age was 69.52 ± 10.17 years, and 169 (50.4%) participants were men. The prevalence of PS was 53.7%. Patients were divided into the PS and non-pre-sarcopenia (NPS) groups. Patients in the PS group were older (71.84 ± 9.78 vs. 66.81 ± 9.97, P < 0.01) and mostly women (65.2 vs. 37.8%, P < 0.01) compared with those in the NPS group. QOL, physical function (38.30 ± 17.63 vs. 44.02 ± 14.76, P < 0.01), physical role functioning (RP) (40.63 ± 15.38 vs. 44.88 ± 13.89, P < 0.01), and bodily pain (BP) (48.42 ± 11.45 vs. 51.24 ± 10.19, P = 0.02) were significantly lower in the PS group than in the NPS group. Logistic regression analyses identified that the independent predictive factors for PS were female sex (odds ratio: 3.16, 95% confidence interval: 2.01-4.98; P < 0.01) and RP (odds ratio: 1.97, 95% confidence interval: 1.24-3.12; P < 0.01). CONCLUSION: QOL characteristics of PS patients with CLD were low physical function, RP, and BP in short form-36. In addition, social role functioning was low in the PS patients aged 65-74 years, whereas RP and BP were low in those aged at least 75 years. Female sex and RP were independent predictors of PS according to the multivariate analysis. Maintaining and increasing muscle mass in patients with CLD may contribute toward improving physical QOL.

Factors influencing on health-related quality of life in South Korean with chronic liver disease.

BACKGROUND: The objective of this study was to determine health-related quality of life (HRQoL) among chronic liver disease (CLD) subjects in South Korea using EuroQol five-dimension questionnaire (EQ-5D). METHOD: The sample consisted of 139 subjects with CLD from the sixth Korean National Health and Nutrition Examination Survey (KNHNES VI). Data were analyzed using SPSS program for descriptive statistics, t-test, ANOVA, Scheffe's test and hierarchical multiple regression. RESULTS: Results indicated that marital status (P < 0.01), occupation (P < 0.01), basic livelihood security recipient status (P < 0.05), hepatocellular carcinoma (P < 0.05), subjective health status (P < 0.01), and depression (P < 0.001) were significant predictors of HRQoL. Health behaviors (alcohol intake, sleep duration) variables were insignificant. CONCLUSION: In conclusion, marital status, occupation, basic livelihood security recipient status (BLSRS), hepatocellular carcinoma (HCC), subjective health status (SHS), and depression were confirmed to be factors affecting the HRQoL. We should be provide to continuous monitoring and education of adequate alcohol intake for patients with CLD. Findings of this study might be used to develop community based health programs and policies for CLD.

The incompatibility of healthcare services and end-of-life needs in advanced liver disease: A qualitative interview study of patients and bereaved carers.

BACKGROUND: Liver disease represents the third commonest cause of death in adults of working age and is associated with an extensive illness burden towards the end of life. Despite this, patients rarely receive palliative care and are unlikely to be involved in advance care planning discussions. Evidence addressing how existing services meet end-of-life needs, and exploring attitudes of patients and carers towards palliative care, is lacking. AIM: To explore the needs of patients and carers with liver disease towards the end of life, evaluate how existing services meet need, and examine patient and carer attitudes towards palliative care. DESIGN: Qualitative study - semi-structured interviews analysed using thematic analysis. Settings/participants: A total of 17 participants (12 patients, 5 bereaved carers) recruited from University Hospitals Bristol. RESULTS: Participants described escalating physical, psychological and social needs as liver disease progressed, including disabling symptoms, emotional distress and uncertainty, addiction, financial hardship and social isolation. End-of-life needs were incompatible with the healthcare services available to address them; these were heavily centred in secondary care, focussed on disease modification at the expense of symptom control and provided limited support after curative options were exhausted. Attitudes towards palliative care were mixed, however, participants valued opportunities to express future care preferences (particularly relating to avoidance of hospital admission towards the end of life) and an increased focus on symptomatic and logistical aspects of care. CONCLUSION: The needs of patients with liver disease and their carers are frequently incompatible with the healthcare services available to them towards the end of life. Novel strategies, which recognise the life-limiting nature of liver disease explicitly and improve coordination with community services, are required if end-of-life care is to improve.

Estimation of utility weights for major liver diseases according to disease severity in Korea.

BACKGROUND: The global burden of liver diseases, such as hepatocellular carcinoma and liver cirrhosis, is substantial. In this study, we estimated utility weights of liver disease-related health states in the general population using a visual analogue scale (VAS) and the standard gamble (SG) method. METHODS: Depictions of standardized health states related to major liver diseases were developed based on patient education materials and previous publications. To fully reflect disease progression from diagnosis to prognosis, each health state comprised four parts: diagnosis, symptoms, treatment, and progression and prognosis. A total of 407 participants from the Korean general population evaluated the health states using the VAS and SG methods in computer-assisted personal interviews. After excluding illogical responses, mean utility weights were calculated for each health state. RESULTS: The utility weights for health states were significantly different according to the existence of inconsistency in general. According to the VAS results, the health state with the highest utility was 'Chronic hepatitis B virus infection' (0.64), whereas the health state with the lowest utility was 'Hepatocellular carcinoma that requires palliative therapy' (0.17). Similarly, the SG results revealed that the health state with the highest utility was 'Chronic hepatitis B virus infection' (0.85), and the health state with the lowest utility was 'Hepatocellular carcinoma that requires palliative therapy' (0.40). CONCLUSIONS: The estimated utility weights in this study will be useful to measure the burden of liver diseases and evaluate cost-utility of programs for reducing the burden of liver diseases.

'I didn't want to let it go too far.' The decisions and experiences of people who inject drugs who received a liver disease assessment as part of a liver health promotion campaign: The LiveRLife study.

BACKGROUND: An open cohort study (LiveRLife) evaluating an intervention integrating non-invasive liver disease assessment via transient elastography (TE) among people who inject drugs (PWID) was conducted in New South Wales, Australia. Participant follow-up occurred 2-16 weeks post-enrolment. It is imperative that PWID understand liver assessment results in order to make informed decisions about their health. The aim of this study was to evaluate the decisions and experiences of participants who received a liver disease assessment, including interpretation of TE score and subsequent health behaviours, using a health literacy framework. METHODS: Participants who had participated in LiveRLife were recruited from two opioid substitution treatment clinics and one medically supervised injecting centre between November 2015 and February 2016. The four recruitment categories were: (a) high TE score (≥9.5kPa)/attended follow-up, n=12; (b) high score/did not attend follow-up, n=2; (c) low score (<9.5kPa)/attended follow-up, n=11; and (d) low score/did not attend follow-up, n=8. Participants were not reminded of their category during recruitment. Inclusion criteria were: participants who received a TE score and informed consent. RESULTS: Of 33 semi-structured interviews, reasons for receiving a TE assessment were varied. Most participants interpreted level of liver disease correctly based on their TE score. Participants with higher TE scores frequently described feeling surprised by their result and also, often incorrectly identified drug use as a cause of advanced liver disease. In contrast, persons with lower TE scores felt encouraged by their result and spoke more to maintenance of healthy behaviours. When applicable, participants spoke of HCV therapy. CONCLUSION: Findings highlight some positive health changes made by PWID following liver disease assessment as well as ongoing misunderstandings of chronic liver disease in relation to illicit drug use. Results will inform strategies for targeted liver health education and 'linkage to care' for PWID with, and at-risk of, advanced liver disease.

Health-Related Quality of Life in Children with Biliary Atresia Living with Native Livers.

INTRODUCTION: This study aimed to quantify and investigate factors affecting the health-related quality of life (HRQoL) in children with biliary atresia (BA) living with their native livers. MATERIALS AND METHODS: A cross-sectional study on the HRQoL using the PedsQL4.0 generic core scales in children with BA aged between 2 to 18 years followed up at the University Malaya Medical Centre (UMMC) in Malaysia was conducted. Two groups, consisting of healthy children and children with chronic liver disease (CLD) caused by other aetiologies, were recruited as controls. RESULTS: Children with BA living with their native livers (n = 36; median (range) age: 7.4 (2 to 18) years; overall HRQoL score: 85.6) have a comparable HRQoL score with healthy children (n = 81; median age: 7.0 years; overall HQRoL score: 87.4; P = 0.504) as well as children with CLD (n = 44; median age: 4.3 years; overall score: 87.1; P = 0.563). The HRQoL of children with BA was not adversely affected by having 1 or more hospitalisations in the preceding 12 months, the presence of portal hypertension, older age at corrective surgery (>60 days), a lower level of serum albumin (≤34 g/L) or a higher blood international normalised ratio (INR) (≥1.2). Children who had liver transplantation for BA did not have a significantly better HRQoL as compared to those who had survived with their native livers (85.4 vs 85.7, P = 0.960). CONCLUSION: HRQoL in children with BA living with their native livers is comparable to healthy children.

Identifying Improved and Non-improved Aspects of Health-related Quality of Life After Liver Transplantation Based on the Assessment of the Specific Questionnaire Liver Disease Quality of Life.

INTRODUCTION: The specific questionnaire Liver Disease Quality of Life (LDQOL) is a valid tool for measuring quality of life (QOL) and has been used to show that liver transplantation (LT), which is an effective treatment for end-stage liver disease, may improve QOL. OBJECTIVES: This study aims to identify aspects of QOL that improve after LT and those that do not. PATIENTS AND METHODS: Patients accepted for LT were invited to answer the LDQOL at baseline and after transplantation at 6 and 12 months. LDQOL contains the 36-item Short Form Health Survey (SF-36) and 12 specific dimensions. Responsiveness was assessed using the paired Student t test. RESULTS: The study included a cohort of 156 patients, 73% males, of an average age of 53 (26-67) years, with the following common indications: tumor (35%), hepatitis C (23%), and alcohol-related (21%) liver disease. Mean scores showed a statistically significant (P < .05) improvement after 1 year in 6 of 8 SF-36 dimensions, in the physical component summary score, and in 7 of 12 disease-specific dimensions. The two dimensions that showed no improvement in the SF-36 dimensions were "social functioning" and "vitality," whereas the specific dimensions to not improve were "sleep problems," "social interaction," "activities of daily living," and "concerns about the future." CONCLUSION: Findings suggest that perceived QOL after LT improves but could be further enhanced with the use of specific programs for amending sleep disorders and physical aspects.

Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study.

OBJECTIVE: To understand the experiences and support needs of people with advanced liver disease and those of their lay and professional carers to inform improvements in the supportive and palliative care of this rapidly growing but currently neglected patient group. DESIGN: Multiperspective, serial interviews. We conducted up to three qualitative in-depth interviews with each patient and lay carer over 12 months and single interviews with case-linked healthcare professionals. Data were analysed using grounded theory techniques. PARTICIPANTS: Patients with advanced liver disease of diverse aetiologies recruited from an inpatient hepatology ward, and their lay carers and case-linked healthcare professionals nominated by the patients. SETTING: Primary and secondary care in South-East Scotland. RESULTS: 37 participants (15 patients, 11 lay and 11 professional carers) completed 51 individual and 13 joint patient-carer interviews. Nine patients died during the study. Uncertainty dominated experiences throughout the course of the illness, across patients' considerable physical, psychological, social and existential needs and affected patients, lay carers and professionals. This related to the nature of the condition, the unpredictability of physical deterioration and prognosis, poor communication and information-sharing, and complexities of care. The pervasive uncertainty also shaped patients' and lay carers' strategies for coping and impeded care planning. While patients' acute medical care was usually well coordinated, their ongoing care lacked structure and focus. CONCLUSIONS: Living, dying and caring in advanced liver disease is dominated by pervasive, enduring and universally shared uncertainty. In the face of high levels of multidimensional patient distress, professionals must acknowledge this uncertainty in constructive ways that value its contribution to the person's coping approach. Pervasive uncertainty makes anticipatory care planning in advanced liver disease challenging, but planning 'just in case' is vital to ensure that patients receive timely and appropriate supportive and palliative care alongside effective management of this unpredictable illness.