Comparison of Quality of Life and Caregiving Burden of 2- to 4-Year-Old Children Post Liver Transplant and Their Parents.

A literature search determined there are no studies on children between 2 and 4 years of age who have had a liver transplant and their parents. For this reason, this study aimed to compare the quality of life of children between 2 and 4 years of age who have had a liver transplant, and the caregiving burden of their parents. The study was carried out as a descriptive cross-sectional study on 47 children who visited Inonu University Liver Transplant Institute outpatient clinic between March 2017 and March 2018. This study found that 59.6% of the children with transplants were male and 38.3% had their organ donated by their mother. There was a positive relationship between the quality of life of the parents and the quality of life and subdimensions of the children. There was a negative relationship between parental quality of life and care burden. This study found that the quality of life of children with liver transplants and their parents was low and, as the quality of life of children was impaired, the caregiving burden of parents increased. Healthcare professionals' awareness of the effect of caregivers' care load on quality of life after liver transplantation can positively affect the healing process.

Between fear and courage: Attitudes, beliefs, and behavior of liver transplantation recipients and waiting list candidates during the COVID-19 pandemic.

Patients with chronic liver disease and patients after solid organ transplantation (SOT) are vulnerable to severe coronavirus disease 2019 (COVID-19). We evaluated fears, attitudes, and opinions associated with COVID-19 in 365 SOT recipients (95% liver, 5% pancreas/kidney), 112 SOT candidates, and 394 immediate household contacts in 2 German transplant centers. Seven (1.5%) patients and 10 (2.5%) controls had contact with confirmed COVID-19 cases. Fear of infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) was expressed by 65% of SOT recipients and by 55% of SOT candidates. SOT recipients had higher levels of fear of infection and more often wore personal protective gear than household controls. Female sex, steroid treatment, and using the local newspaper as a primary source of information were independently associated with expressed fear of infection in SOT recipients. Younger age and more recent transplantation correlated with concerns about severe COVID-19 expressed by patients and with concerns about worse medical care expressed by household controls. One third of the patients expressed fear that immunosuppression could worsen COVID-19 but only 15% used the transplantation center as a source of information. These data show that fears associated with the SARS-CoV-2 pandemic are frequently expressed but measures to prevent infection are regularly followed by patients before and after SOT.

Acute mental change as the presenting sign of posthepatectomy hepatic failure: A case report.

RATIONALE: Hepatectomy is a treatment to increase survival and curability of patients with intrahepatic lesions or malignant tumors. However, posthepatectomy liver failure (PHLF) can occur. This case is a patient showing acute mental change in postanesthetic care unit (PACU) as an uncommon symptom of PHLF after extended right hepatectomy. PATIENT CONCERNS: A 68-year-old male patient was admitted for surgery of Klatskin tumor. He had hypertension and atrial fibrillation. His model for end-stage liver disease score was 16 pts. His serum bilirubin and ammonia levels were 4.75 mg/dL and 132.8 mcg/dL, respectively. Other laboratory data were nonspecific. He underwent extended right hepatic lobectomy including segments IV-VIII for 9 hours. Weight of liver specimen was 1028 g which was about 58% of total liver volume based on computed tomographic volumetry. The patient was extubated and moved to the PACU with stable vital sign and regular self-breathing. He could obey verbal commands. Fifteen minutes after admission to the PACU, the patient showed abruptly decreasing mental status and self-breathing. DIAGNOSES: Brain computed tomography, blood culture, and sputum culture were performed to diagnose brain lesions and sepsis for evaluating the sudden onset comatous mental status. Results showed nonspecific finding. INTERVENTIONS: He was intubated for securing airway and applying ventilatory care. The patient was moved to the intensive care unit. He received intensive conservative therapy including continuous renal replacement therapy and broad-spectrum antibiotics. OUTCOMES: The patient's condition was worsened. He expired on postoperative day 3. LESSONS: Acute mental change is uncommon and rare as initial symptoms of PHLF. Therefore, clinician may overlook the diagnosis of PHLF in patients with acute mental change after hepatectomy. Thus, clinician should plan an aggressive treatment for PHLF including liver transplantation by recognizing any suspicious symptom, although such symptom is rare.

Transition to adult care for pediatric liver transplant recipients: the Western Australian experience.

Transition to adult care is a vulnerable period for pediatric transplant recipients and is associated with reduced medication compliance, graft loss, and increased mortality. Psychosocial outcomes in young adults differ between pediatric transplant recipients and their healthy peers. We conducted a single-center, retrospective cohort study of all pediatric liver transplant recipients who were transitioned through our center. This study aimed to assess the outcomes of transitioned pediatric liver transplant recipients at an Australian center, including mortality, adherence, and psychosocial morbidity. The 1- and 5-year survival rates following transition were 100% and 92%, respectively. There were no episodes of late rejection. In total, 66.7% of patients were compliant with immunosuppression and 61.1% of patients were compliant with clinic attendance. There was a significant relationship between medication compliance and clinic attendance, as well as presence of psychological issues with clinic non-attendance. Psychosocial outcomes were in keeping with age-matched data from the general population. All patients were employed or studying following transition. This is the first study of its kind in the Australian population, and outcomes were superior to published international data. Despite the demonstrated good outcomes, transition programs may improve healthcare engagement in this cohort.

Improvement in the prognosis and development of patients with methylmalonic acidemia after living donor liver transplant.

Liver transplant is a treatment option for patients with MMA-emia. While this therapy does not bring about a complete cure, it is expected to prolong survival and improve the QOL of patients. The aim of this study was to evaluate the significance of LDLT for patients with MMA-emia in Japan. Clinical information on 13 patients with MMA-emia who underwent LDLT was acquired using a self-developed questionnaire sent to the doctors who provided medical care to patients with MMA-emia after LDLT. Almost all of the patients continued on a protein-restricted diet, and the number of acidosis attacks had significantly decreased. Physical growth had recovered to within the normal range by 2.5 years after LDLT, especially in patients who underwent LDLT before the age of 1 year. The average propionyl carnitine (C3) level had significantly decreased after LDLT, and the DQs had not worsened. Liver transplant should be performed for MMA-emia in early life. This can be expected to maintain neurological development and improve the growth and QOL of patients. However, LDLT is not a curative treatment for MMA-emia. A protein-restricted diet should be continued, and renal function should be monitored closely, with consideration of a renal transplant.

Liver transplantation significantly improves global functioning and cerebral processing.

The functional basis of cognitive and quality of life changes after liver transplant is unclear. We aimed to evaluate the neurometabolic and functional brain changes as modulators of cognition and quality of life after transplant in patients with cirrhosis who were with/without pretransplant cognitive impairment and hepatic encephalopathy (HE). Patients with cirrhosis underwent detailed cognitive and quality of life assessment at enrollment and 6 months after transplant. A subset underwent brain magnetic resonance imaging (functional magnetic resonance imaging [fMRI], diffusion tensor imaging [DTI], and magnetic resonance spectroscopy [MRS]) before and after transplant. Changes before and after transplant were analyzed in all patients and by dividing groups in those with/without pretransplant cognitive impairment or with/without pretransplant HE. MRS evaluated ammonia-related metabolites; fMRI studied brain activation for correct lure inhibition on the inhibitory control test; and DTI studied white matter integrity. Sixty-six patients (mean Model for End-Stage Liver Disease score, 21.8; 38 HE patients and 24 cognitively impaired [CI] patients) were enrolled. Quality of life was significantly worse in CI and HE groups before transplant, which improved to a lesser extent in those with prior cognitive impairment. In the entire group after transplant, there was (1) significantly lower brain activation needed for lure inhibition (shown on fMRI); (2) reversal of pretransplant ammonia-associated changes (shown on MRS); and (3) improved white matter integrity (shown on DTI). Importantly, study findings suggest that pretransplant cognitive impairment serves as a marker for clinical outcomes. Regardless of pretransplant history of HE, it was the pretransplant cognitive impairment that was predictive of both posttransplant cognitive and psychosocial outcomes. Therefore, when working with patients and their families, a clinician may rely on the pretransplant cognitive profile to develop expectations regarding posttransplant neurobehavioral recovery. We conclude that functional brain changes after liver transplant depend on pretransplant cognitive impairment and are ultimately linked with posttransplant cognition and quality of life in cirrhosis. Liver Transplantation 22 1379-1390 2016 AASLD.

Psychosocial Outcomes 3 to 10 Years After Donation in the Adult to Adult Living Donor Liver Transplantation Cohort Study.

BACKGROUND: Studies of liver donors' psychosocial outcomes focus on the short term and rely largely on quality-of-life measures not specific to donation. We sought to examine long-term donation effects on 3 psychosocial domains: perceived physical, emotional, and socioeconomic outcomes. METHODS: Individuals donating 3 to 10 years previously at 9 centers were eligible for telephone surveys. Survey responses were examined descriptively. Cluster analysis was used to identify distinct donor groups based on response profiles across psychosocial domains. Potential predictors of response profiles were evaluated with regression analysis. RESULTS: Five hundred seventeen donors (66%) participated (M = 5.8 years postdonation, SD = 1.9). Fifteen percent to 48% of donors endorsed current donation-related physical health problems and concerns, and 7%-60% reported socioeconomic concerns (eg, insurance difficulties, financial expenditures). However, on average, donors experienced high psychological growth, and 90% felt positively about donation. Cluster analysis revealed 5 donor groups. One group showed high psychological benefit, with little endorsement of physical or socioeconomic concerns (15% of donors). Four groups showed less favorable profiles, with varying combinations of difficulties. The largest such group showed high endorsement of physical concerns and financial expenditures, and only modest psychological benefit (31% of donors). Men and nonHispanic whites were most likely to have unfavorable response profiles (Ps < 0.01). Compared with donors aged 19 to 30 years, older donors were less likely to have unfavorable profiles; these differences were significant for donors in the >40 to 50 year age group (Ps < 0.008). CONCLUSIONS: Even many years postdonation, donors report adverse physical and socioeconomic effects, but positive emotional effects as well. Identification of response profiles and predictors may improve targeting of postdonation surveillance and care.

Cognition Predicts Quality of Life Among Patients With End-Stage Liver Disease.

BACKGROUND: Impaired cognitive functioning and poor quality of life (QoL) are both common among patients with end-stage liver disease; however, it is unclear how these are related. OBJECTIVE: This study examines how specific cognitive domains predict QoL among liver transplant candidates by replicating Stewart and colleagues' (2010) 3-factor model of cognitive functioning, and determining how variability in these cognitive domains predicts mental health and physical QoL. METHODS: The sample included 246 patients with end-stage liver disease who were candidates for liver transplant at a large, Midwestern health care center. Measures, including the Repeatable Battery for the Assessment of Neuropsychological Status, Trail Making Test, Shipley Institute of Living Scale, Short-Form Health Survey-36 Version 2, and Hospital Anxiety and Depression Scale, comprised latent variables representing global intellectual functioning, psychomotor speed, and learning and memory functioning. RESULTS: Confirmatory factor analysis results indicate that the 3-factor solution model comprised of global intellectual functioning, psychomotor speed, and learning and memory functioning fit the data well. Addition of physical and mental health QoL latent factors resulted in a structural model also with good fit. Results related physical QoL to global intellectual functioning, and mental health QoL to global intellectual functioning and psychomotor functioning. CONCLUSIONS: Findings elucidate a relationship between cognition and QoL and support the use of routine neuropsychological screening with end-stage liver disease patients, specifically examining the cognitive domains of global intellectual, psychomotor, and learning and memory functioning. Subsequently, screening results may inform implementation of targeted interventions to improve QoL.

Evaluation of Exercise Performance, Cardiac Function, and Quality of Life in Children After Liver Transplantation.

BACKGROUND: In children, after having liver transplantation (LT), it is important to assess the quality of life (QOL). Physical fitness is an important determinant of QOL, and because cardiac function can influence exercise performance, it is the purpose of the present study to assess these factors. METHODS: Children in stable follow-up for more than 6 months post-LT were invited to participate in a case control study. Patients underwent cardiopulmonary exercise testing and echocardiography to assess systolic and diastolic function, and left ventricular wall dimensions. Health-related QOL was evaluated using child- and adolescent-reported PedsQL questionnaire. RESULTS: Twenty-eight of 31 included patients performed a maximal exercise test (15 boys, 11.6 ± 2.9 years, weight, 40.9 ± 13.1 kg; length, 148.6 ± 17.3 cm; body mass index, 17.6 ± 2.3). Liver transplantation patients had lower maximal oxygen consumption (VO2max/kg) (37.5 ± 9.3 mL/kg per minute vs 44.1 ± 8.8 mL/kg per minute), shorter exercise duration (9.3 ± 2.8 minutes vs 13.3 ± 3 minutes) and lower load (71 ± 14 vs 85 ± 20%). They reached the ventilatory anaerobic threshold earlier (81.4 ± 9.5 vs 88.3 ± 11.9%). Echocardiography demonstrated increased interventricular septal wall thickness (interventricular septum in diastole Z value, +0.45 ± 0.49, P < 0.001) and more diastolic dysfunction (lower E', Z value, -0.7 ± 1.02, P = 0.002, higher E/E' Z value, 0.64 ± 1.05. P = 0.005) but no relations with cardiopulmonary exercise testing. Health-related QOL showed lower overall, emotional, psychosocial, and school functioning scores. Children on antihypertensive medication had impaired physical functioning compared with other LT patients. CONCLUSIONS: Lower physical fitness level, more deconditioning and lower health-related QOL in children after LT emphasize the importance of exercise stimulation and fitness programs. Patients on antihypertensive medication seem to be the most vulnerable group suffering from decreased physical fitness.

PTSD in solid organ transplant recipients: Current understanding and future implications.

PTSS are quite prevalent in transplant recipients, although full-scale PTSD may not be that common. Those symptoms have been linked to poor transplant outcomes, perhaps owing to non-adherence to medications and other recommendations, brought about by the avoidance dimension of the PTSD/PTSS construct (patients may avoid taking their medications because they serve as reminder of the emotionally traumatic event--the transplant). It is possible to treat PTSD via specific psychotherapeutic techniques, and the treatment has been shown to be safe and likely effective in other populations. Therefore, practitioners who treat transplant recipients should be familiar with the presentation and treatment of those symptoms. This manuscript provides a systematic literature review of the PTSD/PTSS presentation in the pediatric transplant setting, a synthesis of available research findings, and suggestions for current care and future research.

Health-related quality of life and sleep among Chinese children after living donor liver transplantation.

LDLT is a well-established treatment for most terminal liver diseases in children. Survival rates have improved, yet few studies have considered HRQoL or sleep problems in LDLT recipients. In this cross-sectional study, we enrolled 51 children who had undergone LDLT in Renji Hospital. PedsQL(™) 4.0 Generic Core Scales, PedsQL(™) 3.0 Transplant Module, and Pediatric Sleep Questionnaire were used to assess outcomes. Of all participants, 11.8% (6/51) reported low total HRQoL scores. Participants' scores on most HRQoL subscales were comparable to the scores of healthy children. However, compared with solid organ transplant recipients, LDLT recipients scored significantly lower in About My Medicines II (t = 3.092, p = 0.002) and Worry (t = 2.760, p = 0.006). Sleep problems (41.2%) were common among participants. Hierarchical regression analyses showed that SRBD accounted for significant variance in HRQoL on total generic HRQoL (R(2) = 0.446, p < 0.001), psychosocial health (R(2) = 0.372, p = 0.001), physical health (R(2) = 0.345, p = 0.003), total transplant-specific HRQoL (R(2) = 0.514, p < 0.001), About My Medicines I (R(2) = 0.365, p = 0.013), My Transplant and Others (R(2) = 0.334, p = 0.005), Pain and Hurt (R(2) = 0.544, p < 0.001), Worry (R(2) = 0.401, p = 0.001), Treatment Anxiety (R(2) = 0.526, p < 0.001), How I Look (R(2) = 0.221, p = 0.040), and Communication (R(2) = 0.343, p = 0.012). In conclusion, sleep problems are non-negligible in children after LDLT and predicted significant variance on HRQoL.

Improvement in gastrointestinal and health-related quality of life outcomes after conversion from mycophenolate mofetil to enteric-coated mycophenolate sodium in liver transplant recipients.

OBJECTIVE: To evaluate improvement in gastrointestinal (GI) symptoms and health-related quality of life (HRQoL) in liver transplant recipients switched from mycophenolate mofetil (MMF) to enteric-coated mycophenolate sodium (EC-MPS). METHODS: A multicenter, open-label, single-arm study was undertaken in maintenance liver transplant recipients who reported GI complications with MMF therapy. The patients were switched to equimolar doses of EC-MPS at baseline. The primary end point was the change in the Gastrointestinal Symptom Rating Scale (GSRS) total score after 6 to 8 weeks of treatment with EC-MPS. Other key assessments for GI symptoms and HRQoL included the GSRS subscores, the Gastrointestinal Quality of Life Index (GIQLI), the Psychological General Well-Being Index, and the Overall Treatment Effect (OTE). Paired t-test was used to assess the difference in the mean score changes over time. RESULTS: A total of 34 patients were enrolled and switched to equimolar doses of EC-MPS. After 6 to 8 weeks of EC-MPS treatment, mean GSRS total score improved significantly from 2.88 ± 0.66 to 2.10 ± 0.78. Mean improvement in GSRS total score (-0.77 score points; P = .001) exceeded the minimal clinically important difference. Significant improvements were observed in all GSRS subscales (P < .05), GIQLI total scores (P = .001), and GIQLI subscales "GI symptoms" (P < .001) and "physical function" (0.013). Patients who continued EC-MPS reported sustained benefits compared with patients who switched back to MMF after 6 to 8 weeks of treatment with EC-MPS. On the OTE scale, improvement in symptoms was reported in 76.5% and 61.8% of the patients as perceived by the physicians and the patients. Improvement in HRQoL was reported by 41.2% of the patients. No deaths, biopsy proven acute rejections, or graft losses were reported during the study. CONCLUSION: Conversion from MMF to EC-MPS was associated with a significant improvement in GI symptoms and HRQoL in liver transplant recipients.

Adolescent transplant recipients as peer mentors: a program to improve self-management and health-related quality of life.

The purpose of this study was to examine the safety, feasibility, acceptability, and preliminary efficacy of a cross-age peer mentoring program created to improve adherence and psychosocial outcomes for pediatric liver transplant recipients. Twenty-two participants were assigned to a "mentor now" or "mentor later" waitlist control group. Tacrolimus SD, a validated measure of adherence, was assessed for six months pre- and post-intervention for both groups. Self-report measures of self-management and HRQOL were completed at recruitment and three months after training. Participant report indicated the acceptability of the intervention. Clinically significant improvement in adherence was detected. No significant changes on the psychosocial outcome measures at follow-up were observed. This study demonstrated that an outpatient-based mentoring program is a safe, feasible, and acceptable option to incorporate within a pediatric liver transplant program with potential for promising application in other transplantation populations as well. These results also suggest that the program may have been associated with meaningful improvement in adherence, although further evaluation is warranted.

Health-related quality of life in children with autoimmune liver disease.

BACKGROUND AND AIM: Health-related quality of life (HRQOL), a pivotal outcome indicator of health care interventions, has not been evaluated in children with autoimmune liver disease (AILD). The aim of this study was to determine HRQOL in children with AILD and the factors affecting it. METHODS: The Pediatric Quality Of Life Inventory, generic core scale, was used to collect HRQOL data on children with AILD. Specific liver disease-related questions were added. RESULTS: Survey responses were received from 30 of 40 patients. Patients' mean age at diagnosis was 11.6 ± 4.5 years, with M:F ratio of 1:1.3, and AILD for average of 4.6 ± 4.3 years. Seventy-three percent of patients had advanced liver disease. Mean overall health summary scores for the group per child and parent reports were 71.6 ± 19.0 and 71.3 ± 17.1, respectively, which were lower than healthy controls: 83.9 ± 12.5 and 82.3 ± 15.6 (P = 0.002). Frequent liver-related symptoms were associated with impaired physical and school functioning by child (P = 0.034 and 0.047) and parent reports (P = 0.051 and P = 0.018). Abdominal pain, fatigue, and psychological symptoms were found to adversely affect the HRQOL. Although it was difficult to estimate the effect of individual features of advanced liver disease such as cirrhosis, history of upper gastrointestinal bleed, and portal hypertension on the HRQOL, because of a relatively small sample size, the presence of ascites revealed lower social functioning score per parent report (P = 0.036). In an analysis of patients with any of the above complications versus those without, however, children reported lower social functioning scores (P = 0.018). There were no differences in HRQOL scores in children with autoimmune hepatitis versus primary sclerosing cholangitis versus autoimmune hepatitis/primary sclerosing cholangitis overlap syndrome. CONCLUSIONS: First study to date shows that AILD in children significantly affects HRQOL, especially with frequent liver disease-related symptoms, even in early stages of disease. Findings need to be validated in larger, multicenter studies and will help practitioners understand their patients better and optimize care.

Quality of life and psychological distress of adult recipients after living donor liver transplantation.

This longitudinal prospective study evaluated health-related quality of life (HRQoL) and psychological distress among recipients after right-lobe adult-adult living donor liver transplantation (LDLT). We measured HRQoL among 81 consecutive recipients using the Chinese version of the Medical Outcomes Study Short Form-36 (SF-36). Psychological symptoms were measured using the Symptom Checklist-90-Revised (SCL-90-R). Clinical data were collected from Chinese Liver Transplant Registry records. Sixty-two recipients completed follow-up assessments at 6, 12, 24, and 36 months posttransplantation. SF-36 domain scores were lowest at 6 months, especially for role-physical, bodily pain, vitality, social functioning, role-emotional and mental component summary scale scores. They improved dramatically in the first year posttransplantation. None of the SF-36 domain scores differed significantly between 12 and 24 months. No SCL-90-R dimension score differed significantly among the four assessments (P > .05). Mental component summary scale scores significantly correlated with all four SCL-90-R global severity index scores (P < .05). HRQoL improved significantly in adult recipients in the first year after LDLT, but not thereafter. Patients recovered psychological well-being quickly after transplantation; this factor had an important influence on the HRQoL of LDLT recipients.

Quality of life and mental health comparisons among liver transplant recipients and cirrhotic patients with different self-perceptions of health.

Our aim was to analyze the differences in quality of life and mental health among liver transplant recipients with better (G(1)) and worse (G(2)) perceived health and decompensated cirrhotic patients (G(3)). We selected two groups of patients: 168 liver transplant recipients and 75 cirrhotic patients. The Hospital Anxiety and Depression Scale and SF-36 Health Survey were used. Statistically significant differences showed that cirrhotic patients (G(3)) suffered the highest impairment, and liver transplant recipients with better self-perceived health (G(1)) had the lowest impairment, whereas patients with worse self-perceived health (G(2)) were in an intermediate position between both groups. Moreover, very striking differences, based on large effect sizes, were found among groups on some quality of life dimensions: physical-role, general health, vitality, and physical functioning. In conclusion, the biopsychosocial well-being of liver transplant recipients is better than that of cirrhotic patients, even if the former do not perceive their health positively.

Assessment of health-related quality of life in patients receiving stem cell therapy for end-stage liver disease: an Egyptian study.

INTRODUCTION: This prospective cohort study aimed to assess the influence of stem cell therapy (SCT) on health-related quality of life (HRQOL) by using the SF-36 v2 and to elucidate the influence of objective clinical variables on subjective HRQOL. METHODS: The study included 100 chronic liver disease patients (50 received SCT, and 50 received supportive medical treatment (SMT)). Both groups completed a modified SF-36 v2 form before therapy and at 1-, 3-, 6-, and 12-month intervals. Fifty healthy Egyptian volunteers were enrolled in the study and completed the SF-36 v2 form once. RESULTS: Both SCT and SMT groups showed significantly lower pretherapy SF 36 v2 scores compared with healthy volunteers. In SCT-treated patients, limited complications were encountered (SF-36 v2 scores showed significant improvement in all domains throughout the follow-up period) compared with the deterioration shown by SMT patients after therapy. A significant association was detected between SF-36 v2 scores and laboratory data in SCT patients during the first month after therapy. The grade of ascites improved during the follow-up in SCT compared with SMT patients. The mean survival time was 277.56 days (95% CI, 246.217 to 308.903) for SMT and 359.300 days (95% CI, 353.022 to 365.578) for SCT patients (log rank, 0.00). Stem cell-treated patients showed no malignancies. CONCLUSIONS: SCT positively affects health-related quality of life in cirrhosis patients. The survival rate was significantly improved after SCT.