The Equitable Benefit Approach to guide the assessment of medical and psychosocial factors in liver transplant candidacy.

Lack of available organs poses a significant challenge in meeting the needs of patients with life-threatening liver disease who could benefit from liver transplantation (LT). Psychosocial vulnerability markers have been linked to post-transplant outcomes, raising questions about their use in patient selection. However, their incorporation into selection criteria raises concerns about health equity and potential discrimination. As a result, there is a pressing need to refine fair allocation systems that consider both clinical and psychosocial factors to ensure equitable access and optimize post-transplant outcomes. The Equitable Benefit Approach (EBA) proposed in this paper by the multidisciplinary group of clinical experts in LT from the Italian Society for the Study of the Liver seeks to address these concerns. It presents four procedural principles, the two allocative principles usually applied in transplantation (urgency and utility) and introduces a new one, the principle of health equity. The EBA aims to prioritize patients with the highest transplant benefit while addressing health inequalities. It emphasizes evidence-based decision-making and standardized assessment tools to reliably evaluate psychosocial risk factors. Implementing the EBA involves a multi-step process, including stakeholder engagement, prospective studies to validate its efficacy, development of institutional policies and algorithms, and ongoing monitoring and revision. By following these steps, health care providers can ensure that LT allocation decisions are transparent and responsive to evolving clinical and social contexts. Ultimately, the EBA should offer a comprehensive framework for fair patient selection in LT, considering both biomedical and psychosocial aspects.

Informal Family Care Partner Well-Being Is Diminished in End-Stage Liver Disease.

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.

Palliative Care Always: Hepatology-Virtual Primary Palliative Care Training for Hepatologists.

Palliative care (PC) benefits patients with serious illness including end-stage liver disease (ESLD). As part of a cluster randomized trial, hepatologists were trained to deliver primary palliative care to patients with ESLD using an online course, Palliative Care Always: Hepatology (PCA:Hep). Here we present a multimethod formative evaluation (feasibility, knowledge acquisition, self-efficacy, and practice patterns) of PCA:Hep. Feasibility was measured by completion of coursework and achieving a course grade of >80%. Knowledge acquisition was measured through assessments before and throughout the course. Pre/post-course surveys were conducted to determine self-efficacy and practice patterns. The hepatologists (n = 39) enrolled in a 12-week online course and spent 1-3 hours on the course weekly. The course was determined to be feasible as 97% successfully completed the course and 100% passed. The course was acceptable to participants; 91.7 % reported a positive course experience and satisfaction with knowledge gained (91.6%). The pre/post knowledge assessment showed an improvement of 6.0% (pre 85.9% to post 91.9%, 95% CI [2.8, 9.2], P = 0.001). Self-efficacy increased significantly (P < 0.001) in psychological symptom management, hospice, and psychosocial support. A year after training, over 80% of the hepatologists reported integrating a variety of PC skills into routine patient care. Conclusion: PCA:Hep is feasible, acceptable, and improves learner knowledge and confidence in palliative care skills. This is a viable method to teach primary PC skills to specialists caring for patients with ESLD.

Predictors of Outcomes of Patients Referred to a Transplant Center for Urgent Liver Transplantation Evaluation.

Liver transplantation (LT) is definitive treatment for end-stage liver disease. This study evaluated factors predicting successful evaluation in patients transferred for urgent inpatient LT evaluation. Eighty-two patients with cirrhosis were transferred for urgent LT evaluation from January 2016 to December 2018. Alcohol-associated liver disease was the common etiology of liver disease (42/82). Of these 82 patients, 35 (43%) were declined for LT, 27 (33%) were wait-listed for LT, 5 (6%) improved, and 15 (18%) died. Psychosocial factors were the most common reasons for being declined for LT (49%). Predictors for listing and receiving LT on multivariate analysis included Hispanic race (odds ratio [OR], 1.89; P = 0.003), Asian race (OR, 1.52; P = 0.02), non-Hispanic ethnicity (OR, 1.49; P = 0.04), hyponatremia (OR, 1.38; P = 0.04), serum albumin (OR, 1.13; P = 0.01), and Model for End-Stage Liver Disease (MELD)-Na (OR, 1.02; P = 0.003). Public insurance (i.e., Medicaid) was a predictor of not being listed for LT on multivariate analysis (OR, 0.77; P = 0.02). Excluding patients declined for psychosocial reasons, predictors of being declined for LT on multivariate analysis included Chronic Liver Failure Consortium (CLIF-C) score >51.5 (OR, 1.26; P = 0.03), acute-on-chronic liver failure (ACLF) grade 3 (OR, 1.41; P = 0.01), hepatorenal syndrome (HRS) (OR, 1.38; P = 0.01), and respiratory failure (OR, 1.51; P = 0.01). Predictors of 3-month mortality included CLIF-C score >51.5 (hazard ratio [HR], 2.52; P = 0.04) and intensive care unit (HR, 8.25; P < 0.001). Conclusion: MELD-Na, albumin, hyponatremia, ACLF grade 3, HRS, respiratory failure, public insurance, Hispanic race, Asian race, and non-Hispanic ethnicity predicted liver transplant outcome. Lack of psychosocial support was a major reason for being declined for LT. The CLIF-C score predicted being declined for LT and mortality.

Burdensome Transitions of Care for Patients with End-Stage Liver Disease and Their Caregivers.

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.

Quality of Life after 10 Years of Liver Transplantation.

AIM: This study goal was to evaluate the long-term quality of life of patients who underwent cadaveric liver transplants (CLT) in two Brazilian hospitals. METHODS: Medical records of all patients who underwent CLT and survived over 10 years were revised. The international validated questionnaire Short-Form 36 was employed to assess the quality of life. Patients data were obtained from electronic medical records and study protocols. RESULTS: A total of 342 patients underwent CLT, of which 129 were alive and 93 fully answered the questionnaire and were included in the study. The group consisted of 62 men (66.6%) and 31 women (33.4%), with average age of 40.1±15.9 years. Follow-up time was 16±4.1 years. The most common indication of CLT was hepatic cirrhosis caused by hepatitis C virus, 24.7%. Transplanted patients had lower scores than the general population in mental health [62.9 (95%CI: 60.1-65.7,) vs. 74.5, p < 0.001]. In all other domains, transplanted patients had similar (emotional aspect limitiation, pain, and general health status) or superior (physical aspect limitation, social aspects, functional capacity, and vitality) scores than the general population. Functional capacity score was lower in patients with long-term complications, who were aged more than 50-years, and unemployed. CONCLUSIONS: The quality of life in patients with more than 10 years after CLT was similar or superior than the general population, except for the mental health domain.

Close Correlation between Frailty and Depressive State in Chronic Liver Diseases.

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.

Nonhospice Palliative Care Within the Treatment of End-Stage Liver Disease.

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.

Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives.

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.

Do Social Determinants Define "Too Sick" to Transplant in Patients With End-stage Liver Disease?

BACKGROUND: Delisting for being "too sick" to be transplanted is subjective. Previous work has demonstrated that the mortality of patients delisted for "too sick" is unexpectedly low. Transplant centers use their best clinical judgment for determining "too sick," but it is unclear how social determinants influence decisions to delist for "too sick." We hypothesized that social determinants and Donor Service Area (DSA) characteristics may be associated with determination of "too sick" to transplant. METHODS: Data were obtained from the Scientific Registry of Transplant Recipients for adults listed and removed from the liver transplant waitlist from 2002 to 2017. Patients were included if delisted for "too sick." Our primary outcome was Model for End-Stage Liver Disease (MELD) score at waitlist removal for "too sick." Regression assessed the association between social determinants and MELD at removal for "too sick." RESULTS: We included 5250 delisted for "too sick" at 127 centers, in 53 DSAs, over 16 years. The mean MELD at delisting for "too sick" was 25.8 (SD ± 11.2). On adjusted analysis, social determinants including age, race, sex, and education predicted the MELD at delisting for "too sick" (P < 0.05). CONCLUSIONS: There is variation in delisting MELD for "too sick" score across DSA and time. While social determinants at the patient and system level are associated with delisting practices, the interplay of these variables warrants additional research. In addition, center outcome reports should include waitlist removal rate for "too sick" and waitlist death ratios, so waitlist management practice at individual centers can be monitored.

Psychopathology, quality of life, and related factors in pediatric liver transplantation candidates and recipients.

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.

Psychologic Evaluation in Liver Transplantation: Assessment of Psychologic Profile of End-Stage Liver Disease Patients Before and After Transplant.

OBJECTIVES: Patients with end-stage liver disease face various psychologic challenges. We aimed to compare levels of depression, anxiety, fatigue, sleepiness, and memory in patients before and after liver transplant. MATERIALS AND METHODS: Forty patients (24 male, 16 female) were recruited from the liver transplant clinic affiliated with Shiraz University of Medical Sciences. Patients between 18 and 60 years old with at least a 6th-grade level of education were included in the study; those with severe psychiatric problems were excluded. We performed the following assessments before and 1 month after liver transplant: Hospital Anxiety and Depression questionnaires, California Verbal Learning Test, Epworth Sleepiness Scale, and Fatigue Severity Scale. Paired-sample t tests were used. P < .05 was considered significant. RESULTS: Level of depression in study patients increased after transplant (7.42 vs 8.42; P = .008). We found improvements in categories of immediate memory (65.23 vs 60; P = .007), short delay free recall (10.52 vs 12.52; P < .001), short delay cued recall (11.42 vs 13.00; P = .001), long delay free recall (10.80 vs 12.50; P = .003), long delay cued recall (11.80 vs 13.25; P = .003), and recognition (14.65 vs 15.42; P = .003). Patient levels of fatigue (39.9 vs 33.2; P = .029) and sleepiness (10.8 vs 7.8; P = .004) decreased. Level of anxiety did not change significantly (12.6 vs 12.8; P = .642). CONCLUSIONS: We observed higher levels of depression but improved fatigue, sleepiness, and memory function in patients after liver transplant. No significant change in patient level of anxiety was seen. Future direction is discussed.

Liver transplant candidates have impaired quality of life across health domains as assessed by computerized testing.

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.

ASSOCIATION BETWEEN FATIGUE AND EXERCISE CAPACITY IN PATIENTS WITH CHRONIC LIVER DISEASE AWAITING LIVER TRANSPLANTATION.

BACKGROUND: Fatigue is highly prevalent in end stage liver disease, the studies about its association with exercise capacity in cirrhotic patients before liver are scarse. OBJECTIVE: In this study, we evaluated fatigue in 95 in end stage liver disease patients awaiting transplantation, compared to healthy volunteers, and tested the association between exercise capacity and fatigue. METHODS: Cross-sectional study of patients with chronic liver disease treated at a referral center in Fortaleza, Brazil. Fatigue was quantified with the Fatigue Severity Scale. The patients were submitted to the 6-min walk test, the 6-min step test, the Hospital Anxiety and Depression Scale, C-reative protein measurement and hematocrit count, measurement of dyspnea among other tests. Fatigue data were obtained from healthy individuals for comparison with patients. RESULTS: The mean age of patients was 45.9±12.3 years, and 53.7% were male. Fatigue, anxiety and depression levels were higher among end stage liver disease patients than among controls. A negative correlation was observed between 6 min step test and Fatigue Severity Scale score (r= -0.2; P=0.02) and between hematocrit count and Fatigue Severity Scale score (r= -0.24; P=0.002). Dyspnea on the Borg scale and fatigue were positively correlated (r=31; P=0.002). In the multivariate analysis, low 6-min step test values and high levels of dyspnea were associated with fatigue. CONCLUSION: Fatigue was more prevalent and severe in end stage liver disease patients than in healthy controls. Low 6MST values and high levels of dyspnea were associated with fatigue in this scenario.

Associação da fadiga com capacidade do exercício em pacientes hepatopatas crônicos candidatos a transplante hepático / Association between fatigue and exercise capacity in patients with chronic liver disease awaiting liver transplantation

ABSTRACT BACKGROUND: Fatigue is highly prevalent in end stage liver disease, the studies about its association with exercise capacity in cirrhotic patients before liver are scarse. OBJECTIVE: In this study, we evaluated fatigue in 95 in end stage liver disease patients awaiting transplantation, compared to healthy volunteers, and tested the association between exercise capacity and fatigue. METHODS: Cross-sectional study of patients with chronic liver disease treated at a referral center in Fortaleza, Brazil. Fatigue was quantified with the Fatigue Severity Scale. The patients were submitted to the 6-min walk test, the 6-min step test, the Hospital Anxiety and Depression Scale, C-reative protein measurement and hematocrit count, measurement of dyspnea among other tests. Fatigue data were obtained from healthy individuals for comparison with patients. RESULTS: The mean age of patients was 45.9±12.3 years, and 53.7% were male. Fatigue, anxiety and depression levels were higher among end stage liver disease patients than among controls. A negative correlation was observed between 6 min step test and Fatigue Severity Scale score (r= -0.2; P=0.02) and between hematocrit count and Fatigue Severity Scale score (r= -0.24; P=0.002). Dyspnea on the Borg scale and fatigue were positively correlated (r=31; P=0.002). In the multivariate analysis, low 6-min step test values and high levels of dyspnea were associated with fatigue. CONCLUSION: Fatigue was more prevalent and severe in end stage liver disease patients than in healthy controls. Low 6MST values and high levels of dyspnea were associated with fatigue in this scenario.

RESUMO CONTEXTO: A fadiga é uma queixa comum em indivíduos com doença hepática crônica candidatos a transplante hepático. Estudos sobre sua associação com capacidade do exercício são escassos. OBJETIVO: Avaliar a fadiga de pacientes com hepatopia crônica candidatos a transplante hepático comparando com um grupo de indivíduos saudáveis. Avaliar a associação da fadiga com capacidade de exercício. MÉTODOS: Este é um estudo transversal com pacientes hepatopatas crônicos num centro de referência em Fortaleza, Brasil. Foi utilizado o questionário de gravidade da fadiga. Os pacientes realizaram o teste da caminhada dos 6 min, teste do degrau 6 min, foi aplicada a escala de ansiedade e depressão, foram dosados proteína C reativa e hematócrito. RESULTADO: A idade média dos pacientes foi de 45,9±12,3 anos, sendo que 53,7% eram homens. Os níveis de fadiga e ansiedade e depressão eram maiores entre os pacientes hepatopatas crônicos quando comparados ao grupo controle. Uma correlação inversa foi observada entre fadiga e o teste do degrau (r= -0,2; P=0,02) também entre hematócrito e fadiga (r= -0,24; P=0,002). Houve uma correlação positiva entre dispneia, através da escala de Borg, e fadiga (r=31; P=0,002). Na análise multivariada um baixo desempenho no teste do degrau e um nível maior de dispneia mostraram uma associação com fadiga. CONCLUSÃO: A fadiga é mais frequente entre os pacientes hepatopatas crônicos quando comparados ao grupo controle. O baixo desempenho na capacidade de exercício e uma queixa maior de dispneia apresentaram uma associação com fadiga nestes pacientes.

Perfil psicológico y estrategias de afrontamiento ante la enfermedad de los pacientes en lista de espera para un trasplante de hígado / Psychological profile and disease-coping strategies of patients on the waiting list for liver transplantation

Introducción: Determinar las características psicológicas de los pacientes en lista de espera para trasplante de hígado y analizar las estrategias de afrontamiento de la enfermedad. Métodos: Población del estudio: pacientes en lista de espera para trasplante hepático, incluidos consecutivamente en 24 meses. Perfil psicológico: historia socio-personal; Mini Mental State Examination; Inventario breve de síntomas psicopatológicos; Entrevista Neuropsiquiátrica Internacional; Cuestionario familiar APGAR; Cuestionario de Apoyo Social. Hacer frente a la enfermedad: un cuestionario sobre la adaptación mental a la enfermedad. Los pacientes fueron reclutados en el momento en que fueron incluidos en la lista de espera. Resultados: Los pacientes (n = 112) tenían las siguientes características. El 68% de los pacientes tenían síntomas de psicopatología emocional y el 48% eran de tipo depresivo, ansioso y obsesivo-compulsivo, respectivamente. En términos de apoyo social y familiar, el 27% tenía la percepción de estar en una familia disfuncional (leve-23%; grave-4%). Además, según el Índice de soporte global, el 21% no obtenía un funcional apoyo social y familiar. Afrontando la enfermedad: el 8% se encontraba bien adaptado a la enfermedad, el 92% restante estaba mal adaptado; de los cuales, el 79% tenía un espíritu de lucha más débil, el 51% se englobaba en un contexto de ansiedad y preocupación por hacer frente a la enfermedad, el 34% recurría al fatalismo, el 29% mostraba negación y el 27% impotencia. Conclusiones: Los pacientes que son incluidos en lista de espera para un trasplante de hígado presentan dificultades de adaptación a la situación, por lo que desarrollan complicaciones psicológicas relevantes de tipo emocional

Aim: To determine the psychological characteristics of patients on the liver transplant waiting list; to analye the implications of the patient's psychological profile on coping with the disease. Material and methods: Study population: patients on the liver transplant waiting list. Psychological-profile: Socio-personal history; Mini Mental State Examination; Brief-Symptom Inventory of psychopathological problems; International Neuropsychiatric Interview; Family APGAR questionnaire; Social Support Questionnaire. Coping with the disease: A questionnaire about mental adaptation to the disease. Patients were recruited for the study at the time when they were included on the waiting list. Results: The patients (n = 112) had the following characteristics: 68% of the patients had symptoms of emotional psychopathology, with 48% being of a depressive, anxious and obsessive-compulsive type, respectively. In terms of social and family support, 27% had the perception of being in a dysfunctional family (slight-23%; serious-4%). What is more, according to the Global Support Index, 21% had non-functional social and family support. Coping with the disease: 8% were well-adapted to the disease, the remaining 92% were poorly adapted; of which, 79% had a weaker fighting spirit, 51% expressed anxiety and concern about coping with the disease, 34% found they resorted to fatalism, 29% were in denial and 27% felt helpless. Conclusions: Once liver patients are included on the transplant waiting list, they poorly adapt to the disease, with important emotional implications that result in psychological alterations

End-stage liver disease in alcohol-dependent patients : Case report and overview on clinical management.

This case report is about a 44-year-old woman with alcohol-related end-stage liver disease. Initial contact with the patient was made in the alcohol-outpatient clinic of the Department of Psychiatry and Psychotherapy, Clinical Division of Social Psychiatry, Medical University of Vienna. Due to a particularly poor general condition, Child Pugh Score C/MELD Score 20, the patient was admitted to ward 4A, with the clinical and scientific focus of treating patients with alcohol use disorder. The withdrawal process was complicated by a multitude of factors associated with end-stage liver disease. By explaining the theoretical background of possible somatic as well as psychiatric complications of end-stage liver disease and elaborating on treatment options a comprehensive overview of the psychiatric and somatic management of this patient population is given.

Physicians' Perspectives on Palliative Care for Patients With End-Stage Liver Disease: A National Survey Study.

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.

Educational needs in families of pediatric liver and kidney transplant recipients: A quality improvement project.

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.

Psychological profile and disease-coping strategies of patients on the waiting list for liver transplantation. / Perfil psicológico y estrategias de afrontamiento ante la enfermedad de los pacientes en lista de espera para un trasplante de hígado.

AIM: To determine the psychological characteristics of patients on the liver transplant waiting list; to analye the implications of the patient's psychological profile on coping with the disease. MATERIAL AND METHODS: Study population: patients on the liver transplant waiting list. Psychological-profile: Socio-personal history; Mini Mental State Examination; Brief-Symptom Inventory of psychopathological problems; International Neuropsychiatric Interview; Family APGAR questionnaire; Social Support Questionnaire. Coping with the disease: A questionnaire about mental adaptation to the disease. Patients were recruited for the study at the time when they were included on the waiting list. RESULTS: The patients (n=112) had the following characteristics: 68% of the patients had symptoms of emotional psychopathology, with 48% being of a depressive, anxious and obsessive-compulsive type, respectively. In terms of social and family support, 27% had the perception of being in a dysfunctional family (slight-23%; serious-4%). What is more, according to the Global Support Index, 21% had non-functional social and family support. Coping with the disease: 8% were well-adapted to the disease, the remaining 92% were poorly adapted; of which, 79% had a weaker fighting spirit, 51% expressed anxiety and concern about coping with the disease, 34% found they resorted to fatalism, 29% were in denial and 27% felt helpless. CONCLUSIONS: Once liver patients are included on the transplant waiting list, they poorly adapt to the disease, with important emotional implications that result in psychological alterations.