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1.
Nurs Res ; 73(4): E202-E211, 2024.
Article in English | MEDLINE | ID: mdl-38526959

ABSTRACT

BACKGROUND: Chronic liver disease is a significant global neglected public health problem. End-stage liver disease is associated with substantial symptom complexity, disability, and care needs that require assistance from informal family care partners. Research on these care partners' caregiver burden or strain, symptoms, and quality of life is sparse and has not focused on these variables as co-occurring or in the context of the quality of the relationship care partners have with the patients. OBJECTIVES: The purpose of this study was to provide a collective presentation of patterns and determinants of well-being as measured by caregiver strain, depression, sleep, and quality of life in a cohort of informal family care partners for adult outpatients with end-stage liver disease. METHODS: Care partners (aged >18 years) were recruited from two liver clinics within two tertiary healthcare systems and invited to complete a cross-sectional survey. They completed the Multidimensional Caregiver Strain Index, Patient Health Questionnaire, Pittsburgh Sleep Quality Index, Short Form Health Survey, and Mutuality Scale. Descriptive statistics and latent class mixture modeling were used to analyze these data. RESULTS: The sample was predominantly female and White. The well-being of care partners was diminished. Three distinct classes of well-being were identified: mildly diminished (53.2%), moderately diminished (39.0%), and severely diminished (7.8%). Those at a greater risk of worse well-being were younger and spouses and had poorer relationship quality with the patients. DISCUSSION: To improve the well-being of care partners in moderately and severely diminished classes, assessing and addressing caregiver strain and co-occurring symptoms is essential. Addressing the strain and symptoms has the potential to maintain or optimize care partners' ability to provide care to patients. Future researchers should include longitudinal and dyadic studies to examine how patients' disease progression and symptoms may affect family care partners' well-being and vice versa.


Subject(s)
Caregivers , End Stage Liver Disease , Quality of Life , Humans , Female , Male , Middle Aged , Caregivers/psychology , Quality of Life/psychology , Cross-Sectional Studies , End Stage Liver Disease/psychology , End Stage Liver Disease/complications , Adult , Aged , Surveys and Questionnaires
2.
Hepatology ; 71(6): 2149-2159, 2020 06.
Article in English | MEDLINE | ID: mdl-32167615

ABSTRACT

Palliative care (PC) that has evolved from a focus on end-of-life care to an expanded form of holistic care at an early stage for patients with serious illnesses and their families is commonly referred to as nonhospice PC (or early PC). Patients with end-stage liver disease (ESLD) suffer from a high symptom burden and a deteriorated quality of life (QOL), with uncertain prognosis and limited treatment options. Caregivers of these patients also bear an emotional and physical burden similar to that of caregivers for patients with cancer. Despite the proven benefits of nonhospice PC for other serious illnesses and cancer, there are no evidence-based structures and processes to support its integration within the routine care of patients with ESLD and their caregivers. In this article, we review the current state of PC for ESLD and propose key structures and processes to integrate nonhospice PC within routine hepatology practice. Results found that PC is highly underutilized within ESLD care, and limited prospective studies are available to demonstrate methods to integrate PC within routine hepatology practices. Hepatology providers report lack of training to deliver PC along with no clear prognostic criteria on when to initiate PC. A well-informed model with key structures and processes for nonhospice PC integration would allow hepatology providers to improve clinical outcomes and QOL for patients with ESLD and reduce health care costs. Educating hepatology providers about PC principles and developing clear prognostic criteria for when and how to integrate PC on the basis of individual patient needs are the initial steps to inform the integration. The fields of nonhospice PC and hepatology have ample opportunities to partner clinically and academically.


Subject(s)
End Stage Liver Disease , Gastroenterology/methods , Quality of Life , Delivery of Health Care , End Stage Liver Disease/psychology , End Stage Liver Disease/therapy , Humans , Palliative Care/methods
3.
Dig Dis Sci ; 66(9): 2942-2955, 2021 09.
Article in English | MEDLINE | ID: mdl-32964286

ABSTRACT

BACKGROUND: Patients with end-stage liver disease (ESLD) experience frequent readmissions; however, studies focused on patients' and caregivers' perceptions of their transitional care experiences to identify root causes of burdensome transitions of care are lacking. AIM: To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs. METHODS: We conducted interviews with 15 patients with ESLD and 14 informal caregivers. We used semi-structured interview guides to explore their experiences since the diagnosis of ESLD including their care transitions. Two raters coded interviews independently (κ = 0.95) using template analysis. RESULTS: Participants reported feeling unprepared to manage their informational, psychosocial, and practical care needs as they transitioned from hospital to home after the diagnosis of ESLD. Delay in the timely receipt of supportive care services addressing these care needs resulted in hospital readmissions, emotional distress, caregiver burnout, reduced work capacity, and financial hardship. Participants shared the following resources that they perceived would improve their quality of care: (1) discharge checklist, (2) online resources, (3) mental health support, (4) caregiver support and training, and (5) financial navigation. CONCLUSION: Transitional care models that attend to the informational, psychosocial, and practical domains of care are needed to better support patients with ESLD and their caregivers at the time of diagnosis and beyond. Without attending to the multidimensional care needs of newly diagnosed patients with ESLD and their caregivers, they are at risk of burdensome transitions of care, high healthcare utilization, and poor health-related quality of life.


Subject(s)
Caregiver Burden , End Stage Liver Disease , Information Literacy , Patient Readmission , Psychiatric Rehabilitation , Quality Improvement/organization & administration , Transitional Care , Caregiver Burden/etiology , Caregiver Burden/prevention & control , Caregiver Burden/psychology , Caregivers/psychology , Continuity of Patient Care/organization & administration , Continuity of Patient Care/standards , Efficiency , End Stage Liver Disease/diagnosis , End Stage Liver Disease/epidemiology , End Stage Liver Disease/psychology , End Stage Liver Disease/therapy , Female , Financial Stress , Humans , Male , Medical Overuse/prevention & control , Middle Aged , Needs Assessment , Psychiatric Rehabilitation/methods , Psychiatric Rehabilitation/standards , Transitional Care/organization & administration , Transitional Care/standards , United States/epidemiology
4.
Health Qual Life Outcomes ; 18(1): 10, 2020 Jan 13.
Article in English | MEDLINE | ID: mdl-31931822

ABSTRACT

BACKGROUND: Patients with liver cirrhosis often suffer from complications such as ascites, gastrointestinal bleeding, and infections, resulting in impaired quality of life. Frequently, the close relatives of patients also suffer from a lower quality of life in chronic diseases. In recent years, acute-to-chronic liver failure has been defined as a separate entity with high mortality. Often several organs are affected which makes intensive care therapy necessary. Little is known about the influence of acute-on-chronic-liver failure (ACLF) on the quality of life of patients and the psychosocial burden on close relatives. AIM: The purpose of this prospective study is to investigate the influence of decompensated liver cirrhosis and the onset of ACLF of the patient's' quality of life and the psychosocial burden of close relatives. METHOD: In this non - randomized prospective cohort study a total of 63 patients with acute decompensation of liver cirrhosis and hospital admission were enrolled in the study. To assess the quality of life of patients, the disease specific CLDQ questionnaire was assessed. In addition. Quality of life and psychosocial burden of first degree relatives was measured using the generic SF-36 questionnaire as well as the Zarit Burden Score. RESULTS: 21 of the 63 patients suffered from ACLF. Patients with ACLF showed a lower quality of life in terms of worries compared to patients with only decompensated liver cirrhosis (3,57 ± 1,17 vs. 4,48 ± 1,27; p value: 0,008) and increased systemic symptoms (3,29 ± 1,19 vs. 4,48 ± 1,58; p value: 0,004). The univariate analysis confirmed the link between the existence of an ACLF and the concerns of patients. (p value: 0,001). The organ failure score was significantly associated with overall CLDQ scores, especially with worries and systemic symptoms of patients. Interestingly the psychosocial burden and quality of life of close relative correlates with patient's quality of life and was influenced by the onset of an acute-on-chronic liver failure. CONCLUSION: Patients with decompensated liver cirrhosis suffer from impaired quality of life. In particular, patients with ACLF have a significantly reduced quality of life. The extent of the psychosocial burden on close relative correlates with poor quality of life in patients with decompensated liver disease and is influenced by the existence of ACLF.


Subject(s)
Acute-On-Chronic Liver Failure/psychology , End Stage Liver Disease/psychology , Quality of Life , Acute-On-Chronic Liver Failure/physiopathology , Adult , Aged , Case-Control Studies , End Stage Liver Disease/physiopathology , Family/psychology , Female , Humans , Male , Middle Aged , Organ Dysfunction Scores , Prospective Studies , Surveys and Questionnaires
5.
Pediatr Transplant ; 24(1): e13633, 2020 02.
Article in English | MEDLINE | ID: mdl-31840340

ABSTRACT

BACKGROUND: Liver transplantation (LT) has been accepted as a standard treatment of pediatric liver diseases that can progress to end-stage liver disease or lead to acute liver failure. However, there is a lack of studies clarifying quality of life (QoL) and the characteristics and the prevalence of common psychiatric disorders in children before and/or after LT. Thus, this study aimed to investigate QoL and the prevalence of anxiety, depression, and post-traumatic stress disorder (PTSD) in children and adolescents before and after LT and to compare them with healthy controls. METHODS: The study included 30 children aged 5-18 years who were waiting for LT (pTx group) or had undergone LT (Tx group) as the study groups and 20 children for the control group. The PedsQL was used to evaluate QoL, and SCARED, CDI, and the CPTSD-RI were used to evaluate psychopathology. RESULTS: The QoL scores were higher in the control group compared with the study groups in all or most of the dimensions, depending on the reporter. The mean scores of anxiety, depression, and PTSD of the control group were significantly lower than those of the Tx and pTx groups. A significant positive correlation was found between depression, anxiety, and PTSD scores, and a negative correlation was observed between depression, anxiety, and PTSD scores and QoL. CONCLUSION: Waiting for LT and the transplantation process itself seem to be psychologically traumatic for children. Healthcare providers need to be trained to recognize the symptoms of the main psychiatric disorders.


Subject(s)
Anxiety/etiology , Depression/etiology , End Stage Liver Disease/surgery , Liver Transplantation/psychology , Postoperative Complications , Quality of Life/psychology , Stress Disorders, Post-Traumatic/etiology , Adolescent , Anxiety/diagnosis , Anxiety/epidemiology , Case-Control Studies , Child , Child, Preschool , Depression/diagnosis , Depression/epidemiology , End Stage Liver Disease/psychology , Female , Humans , Male , Postoperative Complications/diagnosis , Postoperative Complications/epidemiology , Prevalence , Psychiatric Status Rating Scales , Stress Disorders, Post-Traumatic/diagnosis , Stress Disorders, Post-Traumatic/epidemiology
6.
Ann Hepatol ; 19(1): 62-68, 2020.
Article in English | MEDLINE | ID: mdl-31558420

ABSTRACT

INTRODUCTION AND OBJECTIVES: Liver transplantation candidates are among the most comorbid patients awaiting lifesaving intervention. Health related quality of life (HRQOL) measured by instruments that incorporate dynamic computerized adaptive testing, could improve their assessment. We aimed to determine the feasibility of administration of the Patient-Reported Outcomes Measurement Information System (PROMIS-CAT) in liver transplant candidates. MATERIALS AND METHODS: Liver transplantation candidates were prospectively enrolled following a review of their available medical history. Subjects were given a tablet computer (iPad) to access the pre-loaded PROMIS CAT. RESULTS: 109 candidates with mean age 55.6±8.6 years were enrolled in this pilot study. Mean MELD-Na score was 16.3±6.3; 92.6% had decompensated liver disease. Leading etiologies of cirrhosis included hepatitis C (34.8%), nonalcoholic steatohepatitis (25.7%) and alcohol (21.1%). Subjects with MELD-Na score>20 had the most significant impairment in HRQOL (anxiety/fear+5.9±2.7, p=0.0289, depression+5.1±2.5, p=0.0428, fatigue+4.3±2.6, p=0.0973) and physical impairment (-7.8±2.5, p=0.0022). Stage of cirrhosis and decompensated liver disease were predictive of impaired HRQOL but Child-Pugh Turcotte score was not. Hepatic encephalopathy was the strongest independent predictor of impaired HRQOL, with significant impairment across all domains of health. CONCLUSIONS: Liver transplant candidates have significantly impaired HRQOL across multiple domains of health as measured by PROMIS-CAT. HRQOL impairment parallels disease severity. Future study is needed to determine how best HRQOL could be systematically included in liver transplantation listing policy, especially in those candidates with hepatic encephalopathy.


Subject(s)
Anxiety/psychology , Depression/psychology , End Stage Liver Disease/psychology , Fatigue/psychology , Hepatic Encephalopathy/psychology , Liver Cirrhosis/psychology , Liver Transplantation , Quality of Life , Activities of Daily Living , Cognition , End Stage Liver Disease/physiopathology , Fatigue/physiopathology , Female , Hepatic Encephalopathy/physiopathology , Humans , Liver Cirrhosis/physiopathology , Male , Middle Aged , Patient Reported Outcome Measures , Pilot Projects , Role , Severity of Illness Index , Sleep , Social Participation , Software , Waiting Lists
7.
Medicina (Kaunas) ; 56(7)2020 Jun 27.
Article in English | MEDLINE | ID: mdl-32605049

ABSTRACT

BACKGROUND AND OBJECTIVES: Few data with regard to the relevance between depression and frailty in chronic liver disease (CLD) patients are currently available. We aimed to elucidate the relationship between frailty and depression as evaluated by the Beck Depression Inventory-2nd edition (BDI-II) in CLD patients (n = 340, median age = 65.0 years). METHODS: Frailty was defined as a clinical syndrome in which three or more of the following criteria were met: body weight loss, exhaustion, muscle weakness, slow walking speed and low physical activity. Depressive state was defined as BDI-II score 11 or greater. RESULTS: Robust (frailty score = zero), prefrail (frailty score = one or two) and frailty were identified in 114 (33.5%), 182 (53.5%) and 44 (12.9%). The median BDI-II score was five. Depressive state was identified in 84 patients (24.7%). The median BDI-II scores in patients with robust, prefrail and frail traits were 2, 7 and 12.5 (robust vs. prefrail, p < 0.0001; prefrail vs. robust, p = 0.0003; robust vs. frail, p < 0.0001; overall p < 0.0001). The proportions of depressive state in patients with robust, prefrail and frail traits were 3.51%, 30.77% and 54.55% (robust vs. prefrail, p < 0.0001; prefrail vs. robust, p = 0.0046; robust vs. frail, p < 0.0001; overall p < 0.0001). BDI-II score significantly correlated with frailty score (rs = 0.5855, p < 0.0001). CONCLUSIONS: The close correlation between frailty and depression can be found in CLD. Preventing frailty in CLD should be approached both physiologically and psychologically.


Subject(s)
Depressive Disorder/etiology , End Stage Liver Disease/complications , Frailty/etiology , Aged , Correlation of Data , Depressive Disorder/psychology , End Stage Liver Disease/psychology , Female , Frailty/psychology , Humans , Incidence , Male , Middle Aged , Retrospective Studies , Surveys and Questionnaires
8.
Liver Transpl ; 25(6): 859-869, 2019 06.
Article in English | MEDLINE | ID: mdl-30963669

ABSTRACT

Specialty palliative care (PC) is underused for patients with end-stage liver disease (ESLD). We sought to examine attitudes of hepatologists and gastroenterologists about PC for patients with ESLD. We conducted a cross-sectional survey of these specialists who provide care to patients with ESLD. Participants were recruited from the American Association for the Study of Liver Diseases membership directory. Using a questionnaire adapted from prior studies, we examined physicians' attitudes about PC and whether these attitudes varied based on patients' candidacy for liver transplantation. We identified predictors of physicians' attitudes about PC using linear regression. Approximately one-third of eligible physicians (396/1236, 32%) completed the survey. Most (95%) believed that centers providing care to patients with ESLD should have PC services, and 86% trusted PC clinicians to care for their patients. Only a minority reported collaborating frequently with inpatient (32%) or outpatient (11%) PC services. Most believed that when patients hear the term PC, they feel scared (94%) and anxious (87%). Most (83%) believed that patients would think nothing more could be done for their underlying disease if a PC referral was suggested. Physicians who believed that ESLD is a terminal condition (B = 1.09; P = 0.006) reported more positive attitudes about PC. Conversely, physicians with negative perceptions of PC for transplant candidates (B = -0.22; standard error = 0.05; P < 0.001) reported more negative attitudes toward PC. In conclusion, although most hepatologists and gastroenterologists believe that patients with ESLD should have access to PC, they reported rarely collaborating with PC teams and had substantial concerns about patients' perceptions of PC. Interventions are needed to overcome misperceptions of PC and to promote collaboration with PC clinicians for patients with ESLD.


Subject(s)
Attitude , End Stage Liver Disease/therapy , Gastroenterologists/psychology , Liver Transplantation , Palliative Care/psychology , Cross-Sectional Studies , End Stage Liver Disease/psychology , Female , Gastroenterologists/statistics & numerical data , Humans , Intersectoral Collaboration , Male , Referral and Consultation/statistics & numerical data , Surveys and Questionnaires/statistics & numerical data , Time Factors , United States , Waiting Lists
9.
Liver Transpl ; 25(7): 995-1006, 2019 07.
Article in English | MEDLINE | ID: mdl-30859755

ABSTRACT

Frailty is associated with increased mortality both before and after liver transplantation (LT). There are no standardized exercise programs, in particular home-based exercise programs (HBEPs), for patients awaiting LT. The aim was to investigate the feasibility of such a program in patients awaiting LT. Patients were randomly selected from the Birmingham LT waiting list and provided with a 12-week HBEP, including average daily step (ADS) targets and twice-weekly resistance exercises. Feasibility was based on patient eligibility (≥66% of waiting list), target recruitment (≥90% of n = 20), safety (no related serious adverse events), and adherence (≥66% adherence to 6-week HBEP). Measures of aerobic (incremental shuttle walk test [ISWT], ADS), functional capacity (short physical performance battery test [SPPBT]), and health-related quality of life (EuroQol 5-Dimension 5-Level (EQ-5D-5L) and hospital anxiety and depression score [HADS]) were taken at baseline and at 6 and 12 weeks. 18 patients (50% male; median age, 55 years) were recruited. All domains of the study feasibility criteria were met. ISWT improved after 6 weeks (50 m; P ≤ 0.01) and 12 weeks (210 m; P ≤ 0.01), despite withdrawal of the telephone health calls. Similarly, improvements were seen in ADS (2700/day; P ≤ 0.01) and the SPPBT (2.5; P = 0.02) after 12 weeks. There was no difference in HADS (median difference [MD] -3; P = 0.69), but EQ-5D-5L after 12 weeks (17.5%; P = 0.04). In conclusion, a 12-week HBEP, incorporating both easy-to-apply resistance and aerobic exercises, is safe and feasible in patients awaiting LT. Measures of aerobic and functional capacity demonstrate trends toward improvement that warrant further investigation in a randomized controlled trial.


Subject(s)
End Stage Liver Disease/surgery , Frailty/rehabilitation , Home Care Services, Hospital-Based , Liver Transplantation , Resistance Training/methods , Adult , Cohort Studies , End Stage Liver Disease/complications , End Stage Liver Disease/diagnosis , End Stage Liver Disease/psychology , Feasibility Studies , Female , Frailty/diagnosis , Frailty/etiology , Frailty/psychology , Humans , Male , Middle Aged , Pilot Projects , Psychiatric Status Rating Scales/statistics & numerical data , Quality of Life , Severity of Illness Index , Treatment Outcome , Waiting Lists
10.
Transpl Int ; 32(8): 808-819, 2019 Aug.
Article in English | MEDLINE | ID: mdl-30793373

ABSTRACT

It is unclear whether liver transplantation confers an increase in health-related quality of life (HR-QoL) across all dimensions of health. This study aimed to estimate the effect of liver transplantation on HR-QoL. Pre- and post-transplantation patients attending an outpatient clinic were invited to complete the condition-specific 'Short form of liver disease QOL' questionnaire. Mixed-effect linear regression and propensity-score matching (PSM) on pretransplantation characteristics were used to estimate the difference in overall HR-QoL associated with transplantation. Of 454/609 (74.5%) eligible patients who were included in the analysis, 102 (22.5%) patients fall under pretransplantation category, and 352 (77.5%) were under post-transplantation category. Overall HR-QoL post-transplantation significantly increased in patients without hepatocellular carcinoma (HCC) (ß = 16.84, 95% CI: 13.33 to 20.35, P < 0.001), but not with HCC (ß = 1.25, 95% CI: -5.09 to 7.60, P = 0.704). Donation after circulatory death (DCD) organ recipients had a significantly lower HR-QoL (ß = -4.61, 95% CI: -8.95 to -0.24, P = 0.043). Following PSM, transplantation was associated with a significant increase in overall HR-QoL (average treatment effect: 6.3, 95% CI: 2.1-10.9). There is a significant improvement in HR-QoL attributable to transplantation in this cohort. Post-transplantation HR-QoL was affected by several factors, including HCC status and DCD transplantation, which has important implications for counselling prior to liver transplantation.


Subject(s)
End Stage Liver Disease/psychology , End Stage Liver Disease/surgery , Liver Transplantation/psychology , Adult , Aged , Algorithms , Carcinoma, Hepatocellular/psychology , Carcinoma, Hepatocellular/surgery , Female , Humans , Liver Neoplasms/psychology , Liver Neoplasms/surgery , Male , Middle Aged , Patient Reported Outcome Measures , Patient-Centered Care , Propensity Score , Quality of Life , Regression Analysis , Surveys and Questionnaires , Treatment Outcome
11.
Pediatr Transplant ; 23(4): e13412, 2019 06.
Article in English | MEDLINE | ID: mdl-30983080

ABSTRACT

Parents of pediatric liver and kidney transplant recipients were surveyed regarding their current education plans (eg, Individualized Education Program, 504), satisfaction with these plans, and interest in educational support from the psychosocial transplant team. Survey results indicate high rates of IEP and 504 plans, academic and related services, and accommodations among this population. The majority of parents/guardians reported satisfaction with their child's current school plan and did not report need for additional transplant team support specific to school services on the survey measure. However, other information highlights the importance for pediatric transplant teams to consider other ways to support this population's educational needs.


Subject(s)
End Stage Liver Disease/surgery , Kidney Failure, Chronic/surgery , Kidney Transplantation , Liver Transplantation , Needs Assessment , Quality Improvement , Adolescent , Child , Child, Preschool , Education, Special , End Stage Liver Disease/psychology , Family/psychology , Female , Humans , Kidney Failure, Chronic/psychology , Life Change Events , Male , Parents/psychology , Patient Care Planning , Patient Satisfaction , Postoperative Care , Schools , Students/psychology
12.
Palliat Support Care ; 17(1): 35-41, 2019 02.
Article in English | MEDLINE | ID: mdl-29860964

ABSTRACT

OBJECTIVE: Structured, empirically supported psychological interventions are lacking for patients who require organ transplantation. This stage IA psychotherapy development project developed and tested the feasibility, acceptability, tolerability, and preliminary efficacy of an 8-week group cognitive behavioral stress management intervention adapted for patients with end-stage liver disease awaiting liver transplantation. METHOD: Twenty-nine English-speaking United Network for Organ Sharing-registered patients with end-stage liver disease from a single transplantation center enrolled in 8-week, group cognitive-behavioral liver stress management and relaxation training intervention adapted for patients with end-stage liver disease. Patients completed pre- and postintervention surveys that included the Beck Depression Inventory II and the Beck Anxiety Inventory. Feasibility, acceptability, tolerability, and preliminary efficacy were assessed.ResultAttendance rate was 69.40%. The intervention was rated as "good" to "excellent" by 100% of participants who completed the postintervention survey in teaching them new skills to relax and to cope with stress, and by 94.12% of participants in helping them feel supported while waiting for a liver transplant. No adverse events were recorded over the course of treatment. Attrition was 13.79%. Anxious and depressive symptoms were not statistically different after the intervention.Significance of resultsThe liver stress management and relaxation training intervention is feasible, acceptable, and tolerable to end-stage liver disease patients within a transplant clinic setting. Anxious and depressive symptoms remained stable postintervention. Randomized controlled trials are needed to study the intervention's effectiveness in this population.


Subject(s)
Cognitive Behavioral Therapy/standards , End Stage Liver Disease/therapy , Liver Transplantation/psychology , Stress, Psychological/psychology , Chi-Square Distribution , Cognitive Behavioral Therapy/methods , End Stage Liver Disease/psychology , Feasibility Studies , Female , Humans , Male , Middle Aged , Pilot Projects , Psychometrics/instrumentation , Psychometrics/methods , Stress, Psychological/etiology , Stress, Psychological/therapy , Surveys and Questionnaires
13.
Metab Brain Dis ; 32(3): 923-933, 2017 06.
Article in English | MEDLINE | ID: mdl-28397153

ABSTRACT

Psychopathological symptoms and reduced health related quality of life (HRQoL) are frequent in cirrhotics, but no data on their association with cirrhosis prognosis assessed by the MELDNa score are available. Prospective data on the long-term effect of deceased donor liver transplantation (LT) on psychopathological symptoms are needed. Before entering the LT waiting list, 44 consecutive LT cirrhotic candidates without a major psychiatric disorder underwent a psychopathological assessment, including Symptom Checklist-90-revised (SCL-90-R) and Defense Style Questionnaire (DSQ). HRQoL was measured by Short Form 36 Health Survey (SF-36). Abnormal performance at each questionnaire was defined by using 44 age, gender, BMI and education-matched healthy subjects. Separate binary logistic regression models were used to test the association of the Child-Pugh, MELD and MELDNa scores with abnormal performance at each questionnaire. Fourteen patients repeated the battery tests 3 years after LT. Before LT, increasing MELDNa was the only prognostic score independently associated with an abnormal SCL-90-R global psychopathological score index (OR: 1.207; 95% CI: 1.026-1.420; P = 0.02) and the best independent predictor of reduced HRQoL. After LT, compared to status prior to LT, performance at SF-36 general health perception scale ameliorated (P = 0.02), performance at SCL-90-R somatization scale (P = 0.001) and global psychopathological score index (P < 0.001) worsened and the negative correlation between the psychopathological global score index and HRQoL disappeared. The severity of cirrhosis in LT candidates should be monitored by the MELDNa score to better establish the right psychological counselling. Psychopathology, and in particular somatization, worsens after LT and should be carefully investigated.


Subject(s)
Liver Cirrhosis/psychology , Liver Cirrhosis/surgery , Liver Transplantation/psychology , Quality of Life/psychology , Severity of Illness Index , Surveys and Questionnaires , End Stage Liver Disease/diagnosis , End Stage Liver Disease/psychology , End Stage Liver Disease/surgery , Female , Humans , Liver Cirrhosis/diagnosis , Liver Transplantation/trends , Male , Middle Aged , Prospective Studies
14.
Pediatr Int ; 59(10): 1080-1086, 2017 Oct.
Article in English | MEDLINE | ID: mdl-28715116

ABSTRACT

BACKGROUND: Decline in neurocognitive function is a reported complication in children with chronic illness. Concerns have been increasing that exposure to a major surgery or trauma may negatively affect cognitive performance in children. This study evaluated cognitive function in 43 Korean children who received organ transplantation (Tx), and sought to identify associated clinical factors. METHODS: Pediatric recipients of kidney (KT) or liver Tx (LT) from 1999 to 2011 were recruited for cognitive tests. Cognitive function was evaluated using intelligence quotient (IQ), social quotient (SQ), and Continuous Performance Test using Advanced Test for Attention scores, which reflect attention ability. Intellectual delay was graded as intellectual disability (ID; IQ <70) or low intelligence (LI; IQ<85). Diagnosis for attention-deficit-hyperactivity disorder (ADHD) was made by pediatric psychiatrists. RESULTS: The subjects consisted of 43 pediatric recipients of 28 LT and 15 KT. There were 20 boys (46.5%). Median age was 3.1 years (range, 0.5-15.3 years) at Tx. Median age at cognitive evaluation was 12.9 years (range, 3.4-18.4 years). Median pre-Tx duration of illness was 1.6 years (range, 0-13.5 years). The prevalence of ID, LI, and ADHD was 11.6%, 32.5%, and 32.5%, respectively. On multivariate analysis, longer pre-Tx duration of illness was a significant factor for LI (OR, 1.263; 95%CI: 1.033-1.544, P = 0.023). CONCLUSION: Longer pre-Tx duration may negatively affect intellectual ability in Korean children. Pre-Tx duration was more significant than the age at Tx or total disease duration per se. Early Tx may be beneficial for cognitive function in children.


Subject(s)
Attention Deficit Disorder with Hyperactivity/etiology , End Stage Liver Disease/psychology , Intellectual Disability/etiology , Kidney Failure, Chronic/psychology , Kidney Transplantation/psychology , Liver Transplantation/psychology , Postoperative Complications/etiology , Adolescent , Attention Deficit Disorder with Hyperactivity/diagnosis , Attention Deficit Disorder with Hyperactivity/epidemiology , Child , Child, Preschool , Cognition , Cross-Sectional Studies , End Stage Liver Disease/surgery , Female , Humans , Infant , Infant, Newborn , Intellectual Disability/diagnosis , Intellectual Disability/epidemiology , Intelligence Tests , Kidney Failure, Chronic/surgery , Male , Postoperative Complications/diagnosis , Postoperative Complications/epidemiology , Prevalence , Retrospective Studies , Risk Factors , Time Factors
15.
Z Gastroenterol ; 55(6): 557-563, 2017 Jun.
Article in English | MEDLINE | ID: mdl-28293918

ABSTRACT

Introduction Older patients are neglected in clinical trials and are likely to be excluded from liver transplantation (LT). The aim of this study was to assess fatigue, anxiety, depression, and health-related quality of life (HRQoL) in elderly LT recipients. Methods Questionnaires were mailed to patients who underwent LT between 1993 and 2013. Three groups were created: patients ≥ 70, 60 - 69, and < 60 years old. Mental-health status, life satisfaction, and fatigue were assessed using, respectively, the Hospital Anxiety and Depression Scale (HADS), Questions on Life Satisfaction (FLZ-M), and the Multidimensional Fatigue Inventory (MFI-20). Results In total, 276 eligible questionnaires (40.1 %) were received out of 689 patients with a history of LT. No age-related differences were found with regard to anxiety or depression in the study sample. Patients ≥ 70 years old had significantly better life satisfaction in regards to income (p = 0.003) and work (p = 0.005) compared to patients < 60 years. The overall fatigue scores were the highest in patients < 60 years (52.7, SD = 15.8) and ≥ 70 years (52.7, SD = 17.7) compared to patients 60 - 69 years old (48.2, SD = 17.3, p = 0.037). Discussion Advanced age alone should not be considered a contraindication for LT due to potentially poor quality of life outcomes.


Subject(s)
Depression/epidemiology , End Stage Liver Disease/psychology , End Stage Liver Disease/therapy , Fatigue/epidemiology , Liver Transplantation/statistics & numerical data , Quality of Life/psychology , Transplant Recipients/psychology , Age Distribution , Aged , Aged, 80 and over , Anxiety , End Stage Liver Disease/epidemiology , Fatigue/psychology , Female , Germany/epidemiology , Humans , Liver Transplantation/psychology , Male , Middle Aged , Patient Satisfaction , Prevalence , Retrospective Studies , Risk Factors , Sex Distribution , Transplant Recipients/statistics & numerical data , Treatment Outcome
16.
Res Nurs Health ; 40(5): 398-413, 2017 10.
Article in English | MEDLINE | ID: mdl-28666053

ABSTRACT

Over half a million Americans are affected by cirrhosis, the cause of end-stage liver disease (ESLD). Little is known about how symptom burden changes over time in adults with ESLD and their informal caregivers, which limits our ability to develop palliative care interventions that can optimize symptom management and quality of life in different patient-caregiver dyads. The purpose of this article is to describe the background and design of a prospective, longitudinal descriptive study, "Symptom Burden in End-Stage Liver Disease Patient-Caregiver Dyads," which is currently in progress. The study is designed to (i) identify trajectories of change in physical and psychological symptom burden in adults with ESLD; (ii) identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and (iii) determine predictors of types of patient-caregiver dyads that would benefit from tailored palliative care interventions. We aim for a final sample of 200 patients and 200 caregivers who will be followed over 12 months. Integrated multilevel and latent growth mixture modeling will be used to identify trajectories of change in symptom burden, linking those changes to clinical events, and quality of life outcomes and characterizing types of patient-caregiver dyads based on patient-, caregiver-, and dyad-level factors. Challenges we have encountered include unexpected attrition of study participants, participants not returning their baseline questionnaires, and hiring and training of research staff. The study will lay the foundation for future research and innovation in ESLD, end-of-life and palliative care, and caregiving.


Subject(s)
Caregivers/psychology , End Stage Liver Disease/physiopathology , End Stage Liver Disease/psychology , Liver Cirrhosis/physiopathology , Liver Cirrhosis/psychology , Palliative Care/psychology , Patients/psychology , Adult , Aged , Aged, 80 and over , Female , Humans , Longitudinal Studies , Male , Middle Aged , Nursing Research , Prospective Studies , Quality of Life/psychology , Research Design , Surveys and Questionnaires , United States
17.
Am J Transplant ; 16(6): 1805-11, 2016 06.
Article in English | MEDLINE | ID: mdl-26613640

ABSTRACT

End-stage liver disease (ESLD) patients are believed to have a high prevalence of depression, although mental health in ESLD has not been studied comprehensively. Further, the relationship between depression and severity of liver disease is unclear. Using baseline data from a large prospective cohort study (N = 500) of frailty in ESLD patients, we studied the association of frailty with depression. Frailty was assessed with the five-component Fried Frailty Index. Patients were assigned a composite score of 0 to 5, with scores ≥3 considered frail. Depression was assessed using the 15-question Geriatric Depression Scale, with a threshold of ≥6 indicating depression; 43.2% of patients were frail and 39.4% of patients were depressed (median score 4, range 0-15). In multivariate analysis, frailty was significantly associated with depression (odds ratio 2.78, 95% confidence interval 1.87-4.15, p < 0.001), whereas model for ESLD score was not associated with depression. After covariate adjustment, depression prevalence was 3.6 times higher in the most-frail patients than the least-frail patients. In conclusion, depression is common in ESLD patients and is strongly associated with frailty but not with severity of liver disease. Transplant centers should address mental health issues and frailty; targeted interventions may lower the burden of mental illness in this population.


Subject(s)
Depression/epidemiology , End Stage Liver Disease/psychology , End Stage Liver Disease/surgery , Frail Elderly/psychology , Liver Transplantation/methods , Mental Health , Severity of Illness Index , Activities of Daily Living , Aged , Female , Humans , Male , Michigan/epidemiology , Middle Aged , Prevalence , Prospective Studies , Quality of Life
18.
Liver Transpl ; 22(7): 895-905, 2016 07.
Article in English | MEDLINE | ID: mdl-27027394

ABSTRACT

Despite major improvements in access to liver transplantation (LT), disparities remain. Little is known about how distrust in medical care, patient preferences, and the origins shaping those preferences contribute to differences surrounding access. We performed a single-center, cross-sectional survey of adults with end-stage liver disease and compared responses between LT listed and nonlisted patients as well as by race. Questionnaires were administered to 109 patients (72 nonlisted; 37 listed) to assess demographics, health care system distrust (HCSD), religiosity, and factors influencing LT and organ donation (OD). We found that neither HCSD nor religiosity explained differences in access to LT in our population. Listed patients attained higher education levels and were more likely to be insured privately. This was also the case for white versus black patients. All patients reported wanting LT if recommended. However, nonlisted patients were significantly less likely to have discussed LT with their physician or to be referred to a transplant center. They were also much less likely to understand the process of LT. Fewer blacks were referred (44.4% versus 69.7%; P = 0.03) or went to the transplant center if referred (44.4% versus 71.1%; P = 0.02). Fewer black patients felt that minorities had as equal access to LT as whites (29.6% versus 57.3%; P < 0.001). For OD, there were more significant differences in preferences by race than listing status. More whites indicated OD status on their driver's license, and more blacks were likely to become an organ donor if approached by someone of the same cultural or ethnic background (P < 0.01). In conclusion, our analysis demonstrates persistent barriers to LT and OD. With improved patient and provider education and communication, many of these disparities could be successfully overcome. Liver Transplantation 22 895-905 2016 AASLD.


Subject(s)
End Stage Liver Disease/psychology , Health Services Accessibility/statistics & numerical data , Healthcare Disparities/statistics & numerical data , Liver Transplantation/psychology , Patient Preference/statistics & numerical data , Tissue and Organ Procurement/statistics & numerical data , Cross-Sectional Studies , End Stage Liver Disease/surgery , Female , Humans , Liver Transplantation/statistics & numerical data , Male , Middle Aged , Minority Groups , Racial Groups , Socioeconomic Factors , Surveys and Questionnaires , Trust , Waiting Lists
19.
Intern Med J ; 46(4): 404-12, 2016 Apr.
Article in English | MEDLINE | ID: mdl-27062203

ABSTRACT

In 2015, there are a few absolute contraindications to liver transplantation. In adult patients, survival post-liver transplant is excellent, with 1-year survival rate >90% and 5-year survival rates >80% and predicted median allograft survival beyond 20 years. Patients with a Child-Turcotte Pugh score ≥9 or a model for end-stage liver disease (MELD) score >15 should be referred for liver transplantation, with patients who have a MELD score >17 showing a 1-year survival benefit with liver transplantation. A careful selection of hepatocellular cancer patients results in excellent outcomes, while consideration of extra-hepatic disease (reversible vs irreversible) and social support structures are crucial to patient assessment. Alcoholic liver disease remains a challenge, and the potential to cure hepatitis C virus infection together with the emerging issue of non-alcoholic fatty liver disease-associated chronic liver failure will change the landscape of the who in the years ahead. The when will continue to be determined largely by the severity of liver disease based on the MELD score for the foreseeable future.


Subject(s)
End Stage Liver Disease/surgery , Liver Transplantation/trends , Patient Selection , Transplant Recipients , Adult , End Stage Liver Disease/mortality , End Stage Liver Disease/psychology , Humans , Liver Transplantation/mortality , Liver Transplantation/psychology , Survival Rate/trends , Time Factors , Transplant Recipients/psychology
20.
HPB (Oxford) ; 18(5): 449-55, 2016 05.
Article in English | MEDLINE | ID: mdl-27154809

ABSTRACT

BACKGROUND: This study seeks to examine the impact of orthotopic liver transplantation (OLT) on Health-Related Quality of Life (HRQoL) and mental health in patients with different MELD scores. METHODS: Patients who has undergone orthotopic liver transplant (OLT) or were on the waiting list for OLT were submitted to HRQoL and depression/anxiety assessment by questionnaire: Short-Form 36 (SF-36), Questions on Life Satisfaction (FLZ-M), Patient Health Questionnaire-4 (PHQ-4). Data were analysed following division of patients into three groups: pretransplant patients with a MELD score <10, ≥10, and OLT recipients. RESULTS: The surveys were sent to 940 consecutive patients within one week in June 2013. Of these 940 patients, 869 (92.4%) met the inclusion criteria. In total, 291 (33.5%) eligible questionnaires (OLT group: 235, MELD <10: 25; MELD _10: 31) were suitable for analysis. General health (GH), vitality (VIT), and mental health (MH) were lower in both pretransplant groups compared to the OLT group (all p < 0.05). Anxiety and depression were higher in the MELD <10 group than in the OLT group (anxiety: p < 0.05; depression: p < 0.01). DISCUSSION: Patients with low MELD scores seem to benefit from OLT with regards to HRQoL and mental health.


Subject(s)
End Stage Liver Disease/psychology , End Stage Liver Disease/surgery , Health Status , Liver Transplantation , Mental Health , Quality of Life , Transplant Recipients/psychology , Waiting Lists , Adolescent , Adult , Aged , Anxiety/psychology , Cross-Sectional Studies , Depression/psychology , End Stage Liver Disease/diagnosis , End Stage Liver Disease/physiopathology , Female , Humans , Male , Middle Aged , Personal Satisfaction , Retrospective Studies , Surveys and Questionnaires , Treatment Outcome , Young Adult
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