Home-based EXercise and motivAtional programme before and after Liver Transplantation (EXALT): study protocol for phase II two-centre, randomised controlled trial.

INTRODUCTION: Physical frailty is associated with increased mortality and poor quality of life (QoL) before and after liver transplantation (LT). Evidence is lacking on how to tailor exercise and behavioural techniques in this patient population. METHODS AND ANALYSIS: Home-based EXercise and motivAtional programme before and after Liver Transplantation (EXALT) is a phase 2b, open-label, two-centre randomised controlled clinical trial designed to investigate whether a remotely monitored 'home-based exercise and theory-based motivation support programme (HBEP)' before and after LT improves QoL in LT recipients. Adult patients awaiting a primary LT will be assessed for eligibility at two LT centres (Birmingham, Royal Free London). Participants will be randomly assigned (1:1) to receive either an HBEP while on the LT waiting list through to 24 weeks after LT (Intervention) or a patient exercise advice leaflet (Control). Using a standard method of difference in means (two-sided significance level 0.05; power 0.90) and accounting for a 35% attrition/withdrawal rate, a minimum of 133 patients will be randomised to each treatment group. The primary outcome measure will be assessed using intention-to-treat analysis of the difference in the Physical Component Score of Short form-36 version 2.0 health-related QoL questionnaire between the groups at 24 weeks post-LT. ETHICS AND DISSEMINATION: The protocol was approved by the South Central-Hampshire A National Research Ethics Committee. Recruitment into the EXALT trial started in May 2022 and is due to end in June 2024, with 217/266 patients randomised to date. The intervention follow-up is due to finish in May 2026. The findings of this trial will be disseminated through peer-reviewed publications, conferences and social media. TRIAL REGISTRATION NUMBER: ISRCTN13476586.

Depression and Quality of Life in Transplant Recipients During the COVID-19 Pandemic.

INTRODUCTION: Depression prevention is crucial for maintaining both physical and mental health and enhancing individuals' quality of life (QOL) post-transplantation. Despite the heightened susceptibility of post-transplant patients to COVID-19 infection, the relationship between depression and QOL during the pandemic remains unclear. This study aimed to (1) identify depression and QOL during the pandemic in kidney and liver transplant patients, and (2) explore the relationship between QOL and depression. DESIGN: This cross-sectional study involved patients aged 20 years or older who were at least 6 months post-transplantation. Depression and QOL were assessed using the Patient Health Questionnaire-9 and the 8-item Short-Form Health Survey, respectively. Logistic regression analysis was conducted to examine the relationship between QOL and depression. The study included 204 participants comprising 68 postkidney transplant and 136 postliver transplant patients. RESULTS: Among all participants, depressive symptoms were present 30% of the time, with 8.3% experiencing moderate or severe depression. Logistic regression analysis revealed that depression (mental component summary; OR = 2.419, P < .001, 95% CI: 1.862-2.915) and postoperative period (physical component summary; OR = 1.397, P = .008, 95% CI: 1.094-1.733) significantly influenced QOL. CONCLUSION: This study suggests that the prevention of depression in emerging infectious disease pandemics may contribute to maintaining the mental QOL of transplant recipients.

What is said about #donateliver or #liverdonor? Reflexive thematic analysis of Twitter (X) posts from 2012 to 2022.

BACKGROUND: There is sustained interest in understanding the perspectives of liver transplant recipients and living donors, with several qualitative studies shedding light on this emotionally charged subject. However, these studies have relied primarily on traditional semi-structured interviews, which, while valuable, come with inherent limitations. Consequently, there remains a gap in our comprehension of the broader public discourse surrounding living liver donation. This study aims to bridge this gap by delving into public conversations related to living liver donation through a qualitative analysis of Twitter (now X) posts, offering a fresh perspective on this critical issue. METHODS: To compile a comprehensive dataset, we extracted original tweets containing the hashtags "#donateliver" OR "#liverdonor", all posted in English from January 1, 2012, to December 31, 2022. We then selected tweets from individual users whose Twitter (X) accounts featured authentic human names, ensuring the credibility of our data. Employing Braun and Clarke's reflexive thematic analysis approach, the study investigators read and analysed the included tweets, identifying two main themes and six subthemes. The Health Policy Triangle framework was applied to understand the roles of different stakeholders involved in the discourse and suggest areas for policy improvement. RESULTS: A total of 361 unique tweets from individual users were analysed. The major theme that emerged was the persistent shortage of liver donors, underscoring the desperation faced by individuals in need of life-saving liver transplants and the urgency of addressing the organ shortage problem. The second theme delved into the experiences of liver donors post-surgery, shedding light on a variety of aspects related to the transplantation process, including the visibility of surgical scars, and the significance of returning to physical activity and exercise post-surgery. CONCLUSION: The multifaceted experiences of individuals involved in the transplantation process, both recipients and donors, should be further studied in our efforts to improve the critical shortage of liver donors.

Patient perspectives on liver transplant evaluation: A qualitative study.

OBJECTIVE: Liver transplant (LT) evaluation is a complex process for patients involving multi-step and parallel medical, surgical, and psychosocial assessments of a patient's appropriateness for transplant. Patients may experience difficulties in navigating the evaluation process, potentially leading to disengagement and resulting in further health decline or death prior to completing evaluation. We aimed to identify and characterize patients' perceptions of undergoing LT evaluation. METHODS: We performed fourteen 30-45 min, semi-structured interviews between 3/2021-5/2021 with patients at a large LT center. Using the constant comparison method, we individually noted themes within and across interviews and codes. RESULTS: Our analysis generated 5 thematic dimensions related to patient engagement (i.e., patient involvement/activation): (1) psychological impact of evaluation on patients' lives; (2) information received during evaluation; (3) prior medical experience of the patient; 4) communication between patients and transplant providers; and (5) support system of the patients. Among these dimensions, we identified 8 themes. CONCLUSION: LT patient engagement is a multi-dimensional component of LT evaluation that incorporates the psychological impact, information received, prior medical experience, communication, and support systems of patients. PRACTICAL IMPLICATIONS: This work can inform targeted interventions for increasing patient engagement during the LT evaluation process.

Post-Donation Regret and Anxiety Among Family Living Liver Donors: The Mediating Roles of Family Relationships and Sense of Mastery.

BACKGROUND Post-donation regret in family living liver donors can impact their mental well-being. This study examined whether the relationship between post-donation regret and anxiety is mediated by family relationships and a sense of mastery. MATERIAL AND METHODS We conducted a secondary analysis of de-identified cross-sectional data from a prior study that included 124 living liver donors. These donors underwent partial hepatectomy between January 2011 and March 2021 at a tertiary hospital in Seoul, South Korea. The data included demographic and clinical characteristics, along with the results from administering the following measures: the Post-Donation Regret Scale, Family Relationships Index, Pearlin Mastery Scale, and the Generalized Anxiety Disorder-2 scale. RESULTS Among family living liver donors, 5.6% had anxiety after donation. The total effect of post-donation regret on anxiety was significant (B=0.41, p<0.05). However, the direct effect of regret on anxiety was not significant (B=-0.05, p=0.733). Post-donation regret had indirect effects on anxiety, solely through family relationships (B=0.329, 95% CI=0.130, 0.563) and sequentially through family relationships and mastery (B=0.088, 95% CI=0.008, 0.232), even after controlling for sex, age, postoperative complications, years since donation, and recipient's death. In addition, postoperative complication was a predictor of anxiety (B=0.64, p<0.05). CONCLUSIONS Providing family-centered and mastery-enhancing interventions may help alleviate the anxiety of family living liver donors.

"My feelings and my thoughts are my lived experience, not the numbers they show me on a piece of paper": Indigenous experiences of liver transplantation in British Columbia, Canada.

Indigenous Peoples in Canada face healthcare inequities impacting access to solid organ transplantation. The experiences of Indigenous patients during the liver transplant process, and how transplant professionals perceive challenges faced by Indigenous Peoples, has not been studied. Thirteen semi-structured qualitative interviews were conducted via telehealth with Indigenous liver transplant patients (n = 7) and transplant care providers (n = 6) across British Columbia, Canada between April 2021-May 2022. Themes were identified to inform clinical approaches and transplant care planning and validated by Indigenous health experts. Among patient participants: transplants occurred between 1992-2020; all were women; and the mean age at the time of interview was 60 years. Among transplant care provider participants: roles included nursing, social work, and surgery; 83% were women; and the median number of years in transplant care was ten. Three broad themes were identified: Indigenous strengths and resources, systemic and structural barriers, and inconsistent care and cultural safety across health professions impact Indigenous patient care during liver transplantation. This study contributes insights into systemic barriers and Indigenous resilience in the liver transplant journey. Dismantling structural barriers to early linkage to care is needed, and training for transplant clinicians on Indigenous histories, cultural protocols, and cultural safety is strongly recommended.

Determining the minimally clinically important difference for the pediatric liver transplant quality of life questionnaire.

PURPOSE: The Pediatric Liver Transplant Quality of Life (PeLTQL) questionnaire is a disease-specific patient reported outcome measure for pediatric liver transplant (LT) recipients. To-date, threshold values above which a change in PeLTQL score is considered meaningful to patients are unavailable. This study proposes the first values for the minimally clinically important difference (MCID) for the PeLTQL. METHODS: In this retrospective cohort study, anchor and distribution-based methods were used to estimate the MCID for the PeLTQL. Questionnaires completed between March 2013, and July 2022 were included if data from two sequential visits were available. An internal anchor question was used for anchor-based determination of the MCID. A final MCID estimate was ascertained from triangulation of all methods. RESULTS: PeLTQL data from 65 LT recipients (26 [40%] male, 17 [42%] biliary atresia, median age at LT 3.08 years [interquartile range 0.99-7.30]), and their caregivers were included for analysis. Median patient age at time of baseline PeLTQL completion was 13.84 (10.90-15.86) years. The MCID for self-PeLTQL total scores ranged from 4.53 to 8.46, and from 4.47 to 8.85 for proxy responses. By triangulation, the MCID of the PeLTQL total score was 6.45 and 6.78 for self and proxy responses respectively. CONCLUSION: A change in PeLTQL score of 6.5 or more points suggests a change in health status that is meaningful to the patient, providing the clinical team an opportunity to engage the patient's voice in reassessing current health status and management strategies.

Long-term medical and quality of life outcomes among voluntary liver donors.

BACKGROUND: Long-term medical and quality of life (QOL) outcomes in voluntary liver donors remain under investigated. The objective of the current study was to report long-term medical outcomes and re-evaluate QOL in living liver donors. METHODS: This was a single-center retrospective cohort study of donors who underwent donor hepatectomy between 2012 and 2018. We investigated long-term outcomes in 7 domains. These include medical problems, surgical procedures, work-related issues, pregnancy outcomes, psychiatric interventions, willingness to donate again, and long-term mortality. QOL was evaluated using short-form 36. RESULTS: The median follow-up time was 61.4 months (53.3-83.7). Among 698 donors, 80 (11.5%) experienced medical problems, 4 (0.6%) had work-related issues, and 20 (2.9%) needed psychiatric assistance. Surgery was performed in 49 donors (7%), and females were more likely to have undergone incisional hernia repair (5.8% vs 1.9%, P = .006). There were 79 postdonation pregnancies including 41 normal vaginal deliveries (51.9%), 35 cesarean sections (44.3%), and 3 miscarriages (3.8%). Willingness to donate again was reported by 658 donors (94.3%). Donors whose recipients were alive were more likely to donate again (95.5% vs 90.5%, P = .01). There were 3 deaths (0.4%) in the long-term. The mean physical composite score at initial and follow-up evaluation was 86.7 ± 13.9 and 76.5 ± 20.9 (P = .001), and the mean mental composite score at initial and follow-up evaluation was 92.1 ± 13.5 and 80.7 ± 16 (P = .001). CONCLUSION: The overall long-term outlook in living liver donors is promising. QOL parameters might deteriorate over time and frequent re-evaluation might be considered.

Parents' experience of children's transitions from intensive care unit after liver transplantation: A qualitative study.

OBJECTIVE: The aim of this study was to understand parents' perspectives on caring for children who underwent liver transplantation in the intensive care unit transition period and to provide a reference for the development of targeted intervention strategies. METHODS: Thirteen parents of children who underwent liver transplantation at a tertiary hospital in Hangzhou, Zhejiang Province were chosen for in-depth semi-structured interviews via purposive sampling. The interview data were analyzed and summarized via content analysis. FINDINGS: Three themes were extracted, including a period of separation and suffering (being apart from child is tough, chilling atmosphere, and limited family access); being an overwhelming caregiver (hope coupled with worry, conflict of roles, and existential care dilemmas); and facing a new normal: searching for information and support (information on medical conditions, post-discharge care assistance, educational support, and peer support). CONCLUSION: For parents whose child underwent liver transplantation, the transition period from the intensive care unit to the general ward is challenging. Parents are burdened with several caregiving responsibilities and require a variety of information and support. It is advised that nurses should offer sufficient information and suitable educational approaches to enhance these parents' capacity to care for their children and assist children and their parents in making a smooth transition. IMPLICATIONS FOR CLINICAL PRACTICE: This study highlights parents' perspectives on caring for children with liver transplants transferred from the intensive care unit to a general ward. Transitional care is strenuous, evoking different feelings before and after transfer. The health care professionals should focus on the needs and challenges faced by parents who are caring for children with liver transplants during the intensive care unit transition period. To achieve this, it is critical to establish a supportive environment and provide suitable information and education for parents to enhance their caregiving abilities.

Mindfulness-based cognitive therapy for adherence of immunosuppressive treatment in liver transplant recipients: A randomized controlled trial.

OBJECTIVE: The aim of this study was to analyze the effects of mindfulness-based cognitive therapy on the adherence of liver transplant recipients to immunosuppressive therapy with a randomized controlled design. METHOD: This randomized controlled trial was performed with 120 liver transplant recipients hospitalized at the liver transplant department of a research and practice hospital (n = 120). While we administered no intervention to the patients in the control group (n = 60), we provided Mindfulness-Based Cognitive Therapy to those in the experimental group (n = 60). We used the Mindful Attention Awareness Scale and the Immunosuppressant Therapy Adherence Scale to collect data. We utilized descriptive statistics, paired-samples t-tests, independent-samples t-tests, one-way analysis of variance, and chi-squared tests to analyze the data. RESULTS: After the intervention, the immunosuppressive therapy adherence levels of the experimental group increased significantly (p < 0.01). On the other hand, the control group had significantly higher adherence to immunosuppressive therapy and significantly higher levels of mindfulness in the pretest phase than it did in the posttest phase (p < 0.01). CONCLUSIONS: Complete adherence to immunosuppressive therapy is imperative for the prevention of graft rejection in liver transplant recipients. In our study, the experimental group equipped with enhanced mindfulness had higher adherence to immunosuppressive therapy. Therefore, the use of Mindfulness-Based Cognitive Therapy in the promotion of adherence to immunosuppressive therapy is recommended.

Caregivers' and providers' perspectives of social and medical care after pediatric liver transplant: Results from the multicenter SOCIAL-Tx study.

Disparities exist in pediatric liver transplant (LT). We characterized barriers and facilitators to providing transplant and social care within pediatric LT clinics. This was a multicenter qualitative study. We oversampled caregivers reporting household financial strain, material economic hardship, or demonstrating poor health literacy. We also enrolled transplant team members. We conducted semistructured interviews with participants. Caregiver interviews focused on challenges addressing transplant and household needs. Transplant provider interviews focused on barriers and facilitators to providing social care within transplant teams. Interviews were recorded, transcribed, and coded according to the Capability, Opportunity, Motivation-Behavior model. We interviewed 27 caregivers and 27 transplant team members. Fifty-two percent of caregivers reported a household income <$60,000, and 62% reported financial resource strain. Caregivers reported experiencing (1) high financial burdens after LT, (2) added caregiving labor that compounds the financial burden, (3) dependency on their social network's generosity for financial and logistical support, and (4) additional support being limited to the perioperative period. Transplant providers reported (1) relying on the pretransplant psychosocial assessment for identifying social risks, (2) discomfort initiating social risk discussions in the post-transplant period, (3) reliance on social workers to address new social risks, and (4) social workers feeling overburdened by quantity and quality of the social work referrals. We identified barriers to providing effective social care in pediatric LT, primarily a lack of comfort in assessing and addressing new social risks in the post-transplant period. Addressing these barriers should enhance social care delivery and improve outcomes for these children.

Psychosocial conditions of children after liver transplant: Post-traumatic stress, depression, and anxiety.

AIM: This study aimed to determine psychosocial conditions, post-traumatic stress, depression, and anxiety of children who underwent a liver transplant. METHOD: This is a relational descriptive study, which was conducted between March 2019 and December 2020 in the Inonu University Liver Transplantation Institute Pediatric Liver Transplant Clinic. The "Child Information Form," "Child Post-Traumatic Stress Reaction Index," "State-Trait Anxiety Inventory for Children-Trait Form," and "Children's Depression Inventory" were used to collect data. The study was conducted with 71 children who had a previous liver transplant. RESULTS: Of the participating children, 56.3% were girls, 63.4% continued their primary school education after the transplant, 32.5% were diagnosed with cirrhosis, 39.4% received the transplant in 2017, 32.4% received it from the mother, and 25.4% received it from a cadaveric donor. Although it had been at least 3 years since the transplant, 47.9% exhibited moderate and 43.7% severe post-traumatic stress responses. There was a significant negative relationship between the age of children with a liver transplant and trait anxiety and post-traumatic stress responses (path coefficients ß = -0.268, p = 0.002; ß = -0.166, p = 0.023, respectively). There was a significant positive relationship between anxiety and post-traumatic stress responses of the children after the transplant and there was a statistically significant relationship between the path coefficients (ß = 0.750; p < 0.001). CONCLUSION: Children who underwent a liver transplant had post-traumatic stress disorder, depression, and trait anxiety.

Psychosocial evaluation of living liver donors-State of current practices in the United States.

We surveyed living donor liver transplant programs in the United States to describe practices in the psychosocial evaluation of living donors focused on (1) composition of psychosocial team; (2) domains, workflow, and tools of the psychosocial assessment; (3) absolute and relative mental health-related contraindications to donation; and (4) postdonation psychosocial follow-up. We received 52 unique responses, representing 33 of 50 (66%) of active living donor liver transplant programs. Thirty-one (93.9%) provider teams included social workers, 22 (66.7%) psychiatrists, and 14 (42.4%) psychologists. Validated tools were rarely used, but domains assessed were consistent. Respondents rated active alcohol (93.8%), cocaine (96.8%), and opioid (96.8%) use disorder, as absolute contraindications to donation. Active suicidality (97%), self-injurious behavior (90.9%), eating disorders (87.9%), psychosis (84.8%), nonadherence (71.9%), and inability to cooperate with the evaluation team (78.1%) were absolute contraindications to donation. There were no statistically significant differences in absolute psychosocial contraindications to liver donation between geographical areas or between large and small programs. Programs conduct postdonation psychosocial follow-up (57.6%) or screening (39.4%), but routine follow-up of declined donors is rarely conducted (15.8%). Psychosocial evaluation of donor candidates is a multidisciplinary process. The structure of the psychosocial evaluation of donors is not uniform among programs though the domains assessed are consistent. Psychosocial contraindications to living liver donation vary among the transplant programs. Mental health follow-up of donor candidates is not standardized.

Reexamining "psychosocial clearance": A procedural framework for psychosocial evaluation in liver transplantation.

Psychosocial and "nonmedical" phenomena are commonly encountered in liver transplantation (LT) evaluations. They are simultaneously crucial decision-making factors and some of the most difficult and controversial clinical matters clinicians confront. Epidemiology, societal trends, and the preponderance of psychological and behavioral factors underpinning common end-stage liver diseases ensure that LT teams will continue to encounter highly complex psychosocial patient presentations. Psychosocial policies, practices, and opinions vary widely among clinicians and LT centers. Liver clinicians already report insufficient psychosocial expertise, which creates a large gap between the stark need for psychosocial expansion, improvement, and innovation in LT and the lack of accompanying guidance on how to achieve it. While the clinical domains of an LT psychosocial evaluation have been well-described, few articles analyze the procedures by which teams determine candidates' "psychosocial clearance" and no conceptual frameworks exist. This article proposes a framework of core domains of psychosocial evaluation procedures, common pitfalls, and practical improvement strategies.

Sleep Quality and Related Factors Among Liver Transplant Recipients in Korea: A Cross-Sectional Study.

BACKGROUND: Poor sleep quality is common after liver transplantation, which lowers health-related quality of life. However, the detection and management of sleeping difficulties in liver transplant recipients have been limited. PURPOSE: This study was designed to assess sleep quality in liver transplant recipients in Korea and associated factors, including symptom experience, depression, and family support, using the theory of unpleasant symptoms as a theoretical framework. METHODS: This cross-sectional study of 149 liver transplant recipients in a Korean tertiary hospital was conducted in 2019. Data were obtained using several structured self-report questionnaires, including the Pittsburgh Sleep Quality Index, Modified Transplant Symptom Occurrence and Symptom Distress Scale, Center for Epidemiologic Studies Depression Scale-Revised, and Family Support Scale. Multiple linear regression was used to determine the factors associated with sleep quality. RESULTS: The prevalence of sleep disturbance was 55% in the sample. Low sleep quality was associated with being female and with having a higher symptom experience, higher depressive symptoms, and lower family support. In the multiple linear regression analysis, depression and symptom experience was shown to significantly affect sleep quality. CONCLUSIONS/IMPLICATIONS FOR PRACTICE: The liver transplant recipients in this study reported poor sleep quality. The factors associated with the sleep quality included depression and symptom experience. To enhance sleep quality, interventions designed to reduce depression and symptoms related to liver transplantation should be provided. The results of this study may be used to develop nursing strategies to improve sleep quality in liver transplant recipients.

Mediating Role of Hope Between Social Support and Self-Management Among Chinese Liver Transplant Recipients: A Multi-Center Cross-Sectional Study.

This study aimed to investigate the common status of self-management in liver transplant recipients and to explore the mediating role of hope in the relationship between social support and self-management. Two hundred and ten liver transplant recipients from two tertiary hospitals were included. Questionnaires were used for general demographic information, the Perceived Social Support Scale, the Herth Hope Index, and the Self-Management Questionnaire for Liver Transplantation Recipients. Lifestyle management of liver transplant recipients was good, while the communication with physicians, cognitive symptom management, and exercise dimensions were less than satisfactory. Minimal assurance of family and education levels were significantly associated with self-management. Social support was positively correlated with self-management and hope (r = .31, p < .01; r = .40, p < .01). Hope was positively correlated with self-management (r = .39, p < .01). Additionally, the effect of social support on self-management was partially mediated (ß = .17, p < .01) by hope. The proportion of mediation of hope was 40.09%. Therefore, well-designed interventions that boost both social support and hope may help improve self-management behavior in liver transplant recipients.

Impact of psychosocial factors on medication level variability index and outcomes in pediatric liver transplant recipients.

BACKGROUND: Caregivers play an important role in maintaining a functioning graft after pediatric liver transplantation. Therefore, the psychosocial factors of both patients and caregivers can have a critical impact on transplant outcomes. Appropriate assessment and recognition of these factors pre-transplantation may allow transplant teams to better define the needs of pediatric organ recipients and develop specific countermeasures, which may then contribute toward improving transplant outcomes. METHODS: We studied 136 pediatric LT recipients followed at Texas Children's Hospital. Licensed social workers conducted comprehensive pre-transplant assessments on each patient, consisting of 22 psychosocial variables that were thought to impact adherence, which were reviewed during our study period. Non-adherence was determined using the MLVI for up to 4 years after transplantation. Biopsy-confirmed rejection episodes were assessed in the first 3 years after liver transplantation. RESULTS: Factors significantly associated with non-adherence (defined as MLVI >2) included parental age and parental education level at assessment, type of insurance, and household income. The number of ACR episodes trended higher in patients with non-adherence, and these patients had a higher number of moderate to severe rejection episodes but this trend was not statistically significant. CONCLUSIONS: Psychosocial characteristics such as parental age, education level, insurance, and household income may contribute significantly to suboptimal adherence to medications after transplantation. Identification of these psychosocial factors and early intervention is essential to the success and equitable care of our pediatric LT recipients.