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1.
Liver Transpl ; 30(4): 431-442, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38009890

RESUMO

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.


Assuntos
Doença Hepática Terminal , Transplante de Fígado , Humanos , Transplante de Fígado/efeitos adversos , Transplante de Fígado/psicologia , Doença Hepática Terminal/diagnóstico , Doença Hepática Terminal/cirurgia
2.
Liver Transpl ; 30(5): 505-518, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-37861339

RESUMO

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.


Assuntos
Transplante de Rim , Transplante de Fígado , Humanos , Estados Unidos/epidemiologia , Doadores Vivos/psicologia , Transplante de Fígado/efeitos adversos , Transplante de Fígado/psicologia , Inquéritos e Questionários , Fígado
3.
Liver Transpl ; 30(7): 717-727, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38166123

RESUMO

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.


Assuntos
Cuidadores , Transplante de Fígado , Pesquisa Qualitativa , Humanos , Transplante de Fígado/psicologia , Transplante de Fígado/efeitos adversos , Transplante de Fígado/estatística & dados numéricos , Transplante de Fígado/economia , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Cuidadores/economia , Masculino , Feminino , Criança , Pré-Escolar , Adulto , Adolescente , Apoio Social , Lactente , Efeitos Psicossociais da Doença , Entrevistas como Assunto , Atitude do Pessoal de Saúde , Pessoa de Meia-Idade , Disparidades em Assistência à Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/economia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/economia , Acessibilidade aos Serviços de Saúde/organização & administração , Adulto Jovem
4.
J Pediatr Gastroenterol Nutr ; 79(1): 119-125, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38801021

RESUMO

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.


Assuntos
Transplante de Fígado , Diferença Mínima Clinicamente Importante , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Humanos , Transplante de Fígado/psicologia , Masculino , Feminino , Estudos Retrospectivos , Criança , Inquéritos e Questionários , Adolescente , Pré-Escolar , Lactente
5.
BMC Public Health ; 24(1): 1904, 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39014341

RESUMO

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.


Assuntos
Transplante de Fígado , Doadores Vivos , Pesquisa Qualitativa , Mídias Sociais , Humanos , Mídias Sociais/estatística & dados numéricos , Doadores Vivos/psicologia , Doadores Vivos/estatística & dados numéricos , Transplante de Fígado/psicologia , Obtenção de Tecidos e Órgãos
6.
J Pediatr Nurs ; 75: e75-e80, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38216348

RESUMO

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.


Assuntos
Transplante de Fígado , Transtornos de Estresse Pós-Traumáticos , Criança , Feminino , Humanos , Masculino , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Transplante de Fígado/efeitos adversos , Transplante de Fígado/psicologia , Depressão/epidemiologia , Depressão/psicologia , Ansiedade/epidemiologia , Ansiedade/psicologia , Transtornos de Ansiedade
7.
Psychosom Med ; 85(1): 98-105, 2023 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-36201770

RESUMO

OBJECTIVE: Psychosocial parameters play a pivotal role in organ recipient evaluation before wait-listing for transplantation because of their impact on organ and patient outcome. Patients in need of heart (HTx), liver (LTx), or kidney transplantation (KTx) face distinct physical and psychological challenges. This study compares the psychosocial characteristics and preferences for additional therapy for patients undergoing assessment for these three types of organ transplantation to optimize patient-tailored psychological, social, and other supportive interventions. METHODS: We conducted a cross-sectional, observational study with 1110 potential transplantation candidates (LTx, n = 544; KTx, n = 330; HTx, n = 236), psychosocial status was determined for depressive symptoms (Patient Health Questionnaire Depression Scale), anxiety symptoms (seven-item Generalized Anxiety Disorder Screener), health-related quality of life (36-Item Short Form Health Survey), perceived social support (Perceived Social Support Questionnaire), sense of coherence (SoC; short form of the Sense of Coherence Scale), self-efficacy (General Self-Efficacy Short Scale), and body image (German Body Image Questionnaire-20). Preferences for additional supportive therapy were assessed dichotomously. Data were analyzed using multivariate analysis of covariance and χ2 tests. RESULTS: Patient groups differed significantly regarding depression ( F (2,1107) = 35.283, p < .001, partial η2 = 0.01), anxiety ( F (2,1107) = 15.027, p < .001, partial η2 = 0.03), health-related quality of life (physical: F (2,1107) = 96.772, p < .001, partial η2 = 0.15; mental: F (2,1107) = 11.442, p < .001, partial η2 = 0.02), perceived social support ( F (2,1107) = 20.813, p < .001, partial η2 = 0.04), SoC ( F (2,1107) = 12.920, p < .001, partial η2 = 0.02), self-efficacy ( F (2,1107) = 17.308, p < .001, partial η2 = 0.03), and body image (rejecting body evaluation: F (2,1107) = 5.006, p = .007, partial η2 = 0.01; vital body dynamics: F (2,1107) = 40.216, p < .001, partial η2 = 0.07). Patients evaluated for HTx showed the highest psychosocial impairment and the highest inclination regarding additional supportive therapy. CONCLUSIONS: Patients evaluated for HTx, LTx, and KTx have distinct psychosocial characteristics and treatment preferences. HTx patients display the highest psychosocial impairment. We suggest psychocardiological treatment structures for optimal outcome.


Assuntos
Transplante de Coração , Transplante de Rim , Transplante de Fígado , Humanos , Estudos Transversais , Transplante de Coração/psicologia , Rim , Fígado , Qualidade de Vida/psicologia , Transplante de Rim/psicologia , Transplante de Fígado/psicologia , Depressão , Ansiedade , Apoio Social , Imagem Corporal , Autoeficácia
8.
Pediatr Transplant ; 27(1): e14425, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36325588

RESUMO

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.


Assuntos
Imunossupressores , Transplante de Fígado , Criança , Humanos , Imunossupressores/uso terapêutico , Transplante de Fígado/psicologia , Estudos Retrospectivos , Rejeição de Enxerto/diagnóstico , Rejeição de Enxerto/psicologia , Biópsia , Adesão à Medicação , Transplantados
9.
J Clin Nurs ; 32(15-16): 4710-4718, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36320122

RESUMO

AIMS AND OBJECTIVES: The aim of this study was to explore the mental health of transplant recipients, especially psychological integration and the donor-recipient relationship. BACKGROUND: Psychological integration and the donor-recipient relationship are unique psychological perception of recipients with transplantation, which have important effects on their mental health and recovery. However, few studies have focused on the feelings and attitudes of cadaveric liver transplant recipients. DESIGN: A qualitative descriptive design was used. METHODS: Individual semi-structured interviews were conducted face-to-face with 30 recipients after liver transplantation. Qualitative content analysis was used and data saturation was achieved. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) were used. RESULTS: Three themes and eight subthemes were identified. (1) Psychological integration-acknowledging the transplanted liver was a part of their own body and attaching great importance to the liver; (2) Attitudes towards the donor-gratitude to the donor, being inspired by the dedication of the donor and mourning the donor's misfortune; and (3) Living in the moment-health behaviours of self-care, emotional regulation and positive attitude about life. CONCLUSION: The psychological integration of recipients of cadaveric liver transplants is smooth, and the attitudes towards the donor are positive. From the perspective of positive psychology, we observed the important role of post-traumatic growth of the recipient and positive emotions in promoting the recipient's health behaviours for self-care, emotion regulation and attitudes towards life. RELEVANCE FOR CLINICAL PRACTICE: Medical staff should help recipients to deal with these issues about the organ and its donor constructively and guide them to focus on postoperative inner growth and positive emotion.


Assuntos
Luto , Transplante de Fígado , Humanos , Transplante de Fígado/efeitos adversos , Transplante de Fígado/psicologia , Saúde Mental , Psicologia Positiva , Cadáver , Doadores Vivos/psicologia
10.
Liver Transpl ; 28(3): 422-436, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34529886

RESUMO

Survivorship after liver transplantation (LT) is a novel concept providing a holistic view of the arduous recovery experienced after transplantation. We explored components of early survivorship including physical, emotional, and psychological challenges to identify intervention targets for improving the recovery process of LT recipients and caregivers. A total of 20 in-person interviews were conducted among adults 3 to 6 months after LT. Trained qualitative research experts conducted interviews, coded, and analyzed transcripts to identify relevant themes and representative quotes. Early survivorship comprises overcoming (1) physical challenges, with the most challenging experiences involving mobility, driving, dietary modifications, and medication adherence, and (2) emotional and psychological challenges, including new health concerns, financial worries, body image/identity struggles, social isolation, dependency issues, and concerns about never returning to normal. Etiology of liver disease informed survivorship experiences including some patients with hepatocellular carcinoma expressing decisional regret or uncertainty in light of their post-LT experiences. Important topics were identified that framed LT recovery including setting expectations about waitlist experiences, hospital recovery, and ongoing medication requirements. Early survivorship after LT within the first 6 months involves a wide array of physical, emotional, and psychological challenges. Patients and caregivers identified what they wish they had known prior to LT and strategies for recovery, which can inform targeted LT survivorship interventions.


Assuntos
Transplante de Fígado , Sobrevivência , Adulto , Cuidadores/psicologia , Humanos , Transplante de Fígado/efeitos adversos , Transplante de Fígado/psicologia , Pesquisa Qualitativa , Qualidade de Vida/psicologia
11.
Liver Transpl ; 28(2): 269-279, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34137503

RESUMO

Objective cognitive assessments, a gold standard diagnostic tool for cognitive impairment, may not be feasible in busy liver transplantation (LT) practice because they are often time consuming. This study determined whether subjective cognition, patients' self-ratings and/or caregivers' ratings of patients' cognition, reflects objective cognition in LT recipients. A convenience sample of 60 adult LT recipients and their caregivers, recruited at a single transplant center, participated in this cross-sectional descriptive study. Subjective cognition (ie, recipient self-rated and caregiver rated) was measured using the Everyday Cognition (ECog; global and 6 domain scores). Objective global and domain-specific cognition of recipients was measured using the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS), Trail Making Test parts A and B, Digit Span Backward, and Rey-Osterrieth Complex Figure. Agreement between LT recipients' ECog scores and those of their caregivers was fair to moderate (intraclass correlation coefficient = 0.48 for global score, 0.35-0.56 for domain scores). Significant, albeit rather weak, correlations were found between subjective and objective scores. Recipients' ECog visuospatial abilities scores were correlated with Rey-Osterrieth Complex Figure scores (rs  = -0.39; P = 0.007), whereas caregivers' ECog global, attention, visuospatial abilities, and organization scores were, respectively, correlated with the scores of RBANS global (rs  = -0.33; P = 0.04) and attention (rs  = -0.46; P = 0.005), Rey-Osterrieth Complex Figure (Copy; rs  = -0.34; P = 0.03), and Trail Making Test part A (rs  = 0.31; P = 0.049). The findings suggest that caregivers may estimate LT recipients' cognition better than recipients themselves. Caregivers may provide supplemental information that could be useful for clinicians when considering the cognitive functioning of LT recipients.


Assuntos
Cuidadores , Transplante de Fígado , Adulto , Cuidadores/psicologia , Cognição , Estudos Transversais , Humanos , Transplante de Fígado/efeitos adversos , Transplante de Fígado/psicologia , Testes Neuropsicológicos
12.
Clin Transplant ; 36(3): e14556, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34881451

RESUMO

Anonymous living organ donation is an understudied but rapidly expanding sector in organ transplantation, in which donors choose to donate anonymously to a recipient in need. The family members and close support network of living donors often play a crucial role in the donation process, and their influence likely has a large impact on the decision to donate as well as the donor's physical and psychosocial state. However, there is limited data examining the impact donor families have on the anonymous donor, and in turn, the impact donation has on donors' families. To assess this, we analyzed a semi-structured qualitative interview on living donor experiences with 26 anonymous living liver donors for common themes concerning donor families. Responses surrounding donor families were grouped into three major categories: (1) family reactions to donation, ranging from (a) pride/support, (b) fear/worry, and (c) jealousy/anger; (2) the impact of donation on donor-family relationships, including (a) positive impacts, (b) negative impacts, (c) a positive ripple effect; (3) gaps in institutional support for donor families. This study provides unique information on anonymous living liver donor perceptions related to their families and will help improve existing programs to accommodate donor family needs and cater to donor relationships.


Assuntos
Transplante de Fígado , Obtenção de Tecidos e Órgãos , Família/psicologia , Humanos , Fígado , Transplante de Fígado/psicologia , Doadores Vivos/psicologia
13.
Pediatr Transplant ; 25(7): e14072, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34245065

RESUMO

BACKGROUND: HRQOL is a key outcome following pediatric LT. Parent-proxy reports may substitute for patients unable to report their own HRQOL. This study compared parent-proxy and self-reported HRQOL in children who have undergone LT. METHODS: Pediatric LT recipients between the ages of 8 and 18 years, and a parent, completed self and proxy versions of the PeLTQL questionnaire, PedsQL Generic and Transplant modules, and standardized measures of depression and anxiety. RESULTS: Data from 129 parent-patient dyads were included. Median parent age was 44 years, and most (89%) were mothers. Median patient age was 2.5 years at LT and 13.6 years at the time of study participation. Parents had significantly lower scores than patients on PedsQL total generic (70.8 ± 18.5 and 74.3 ± 19.0, p = .01), PeLTQL coping and adjustment (63.0 ± 15.6 and 67.3 ± 16.2, p < .01), and social-emotional (66.3 ± 14.9 and 71.9 ± 15.6, p < .001) domains. Higher patient anxiety and depression were related to larger absolute differences between parent-proxy and self-reported scores on all HRQOL measures (all p < .05). In this disparity, parents reported higher HRQOL scores than their child as self-reported anxiety and depression scores increased. CONCLUSIONS: Differences in concordance between parent-proxy and self-reported HRQOL scores can be more prominent when children have more symptoms of anxiety and depression. Children's mental health symptoms should be queried, if feasible, when interpreting differences in parent and child reports of HRQOL.


Assuntos
Ansiedade/epidemiologia , Depressão/epidemiologia , Transplante de Fígado/psicologia , Pais/psicologia , Qualidade de Vida , Autorrelato , Adolescente , Criança , Feminino , Humanos , Masculino , Procurador
14.
Pediatr Transplant ; 25(3): e13982, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33590643

RESUMO

Health-related quality of life (HRQOL) after intestinal transplantation (IT) is important, as many psychological troubles have been reported in these patients on the long term. Our aim was to assess and compare HRQOL of patients after IT to patients after liver transplantation (LT) or on home parenteral nutrition (HPN) for intestinal failure. A cross-sectional study included patients and their parents between 10 and 18 years of age, on HPN for more than 2 years, or who underwent IT or LT, with a graft survival longer than 2 years. Quality of life was explored by Child Health Questionnaire. Thirteen children-parents dyads after IT, 10 after LT, and eight children on HPN completed the survey. Patients were a median age of 14 years old, a median of 10 years post-transplantation or on HPN. Patients after IT scored lower than patients after LT or on HPN in "social limitations due to behavioral difficulties" and in "behavior." They scored higher than those on HPN in "global health." Parents of children after IT scored lower than those after LT in many domains. No relevant correlation with clinical data was found. Our study showed the multi-level impact of IT on quality of life of patients and their parents. It highlights the importance of a regular psychological follow-up for patients, but also of a psychological support for families. Helping the patients to overcome the difficulties at adolescence may improve their mental health in adulthood.


Assuntos
Insuficiência Intestinal/terapia , Intestinos/transplante , Transplante de Fígado , Nutrição Parenteral no Domicílio , Qualidade de Vida , Adolescente , Criança , Estudos Transversais , Feminino , Humanos , Transplante de Fígado/psicologia , Masculino , Nutrição Parenteral no Domicílio/psicologia , Projetos Piloto , Estudos Prospectivos , Sobreviventes
15.
Pediatr Transplant ; 25(8): e14121, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34428322

RESUMO

BACKGROUND: Young adults who underwent liver transplantation in childhood (YALTs) are highly vulnerable to non-adherent behavior and psychosocial problems. During the COVID-19 pandemic, special efforts may be necessary to maintain contact with these patients and offer support. This can be achieved through the use of telemedicine. The study's objective was to assess adherence and the psychosocial situation of YALTs during the COVID-19 pandemic in Germany and to evaluate the utilization of video consultations. METHODS: In May 2020, a questionnaire was sent to YALTs treated at the Hamburg University Transplant Center, accompanied by the offer of video appointments with the attending physician. The questionnaire included the Generalized Anxiety Disorder Scale 7, the Patient Health Questionnaire 2, and questions compiled by the authors. RESULTS: Of 98 YALTs, 12% used the video consultation, while 65% had an in-person appointment. The 56 patients who completed the questionnaire did not report reduced medication adherence during the pandemic, but 40% missed follow-up visits with their primary care physician or check-up laboratory tests. About 70% of YALTs were afraid to visit their physician and the transplant center, and 34% were afraid of a SARS-CoV-2 infection. Mental health and well-being were unimpaired. CONCLUSIONS: During the COVID-19 pandemic, YALTs in our study did not show an increased need for psychosocial support, but a majority were afraid to attend medical appointments, and 40% reported lower appointment adherence. Acceptance of video consultations was lower than expected. The reasons for this need to be further investigated in order to optimize care.


Assuntos
COVID-19/epidemiologia , Transplante de Fígado/psicologia , Cooperação do Paciente , Telemedicina , Adolescente , Adulto , Alemanha , Humanos , Masculino , Adesão à Medicação , Pandemias , SARS-CoV-2 , Inquéritos e Questionários , Adulto Jovem
16.
Dig Dis Sci ; 66(4): 1360-1366, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32323075

RESUMO

BACKGROUND: Cirrhosis is associated with poor health-related quality of life (HRQOL), cognitive dysfunction (CD), and lack of coordination leading to falls. Tandem gait (TG; heel-toe) can be used to assess coordination. The impact and relationship between CD, TG and falls pre-/post-liver transplant (LT) is unclear. We aimed to determine the impact of LT on CD, abnormal TG, and HRQOL in cirrhosis. METHODS: We analyzed patients who underwent complete neurological examination, cognitive testing by psychometric hepatic encephalopathy score (PHES), and HRQOL assessment using sickness impact profile (SIP). All patients were followed for 1 post-LT visit at 6 or 12 months post-LT for clinical course and falls. Change in CD, TD, and falls pre-/post-LT were compared. RESULTS: Off 131 recruited, 61 patients completed all visits. Majority were men (84%), with HCV etiology (34%). Pre-LT: Abnormal TG trended towards increased falls (OR 3.3, P = 0.08). Forty-nine % had abnormal TG, 61% had CD, 32.7% had CD + abnormal TG, 62% had prior OHE, and 14.7% had falls. Abnormal and normal TG patients had similar ages, BMI, sex, education level, and MELD scores. Abnormal TG group had higher prior overt HE (P = 0.03) and worse physical SIP score (P = 0.008). Post-LT: There was sustained improvement in CD, HRQOL, falls, and TG post-LT more at 12 than 6 months in all patients. Patients who had abnormal TG pre-LT continued to have a worse PHES (P = 0.0064) and physical SIP score (P = 0.008) compared to normal pre-LT TG patients. CONCLUSION: After LT, there is a sustained improvement in coordination measured via tandem gait, accompanied by a lower rate of falls.


Assuntos
Acidentes por Quedas/prevenção & controle , Análise da Marcha/métodos , Marcha/fisiologia , Cirrose Hepática/cirurgia , Transplante de Fígado/tendências , Qualidade de Vida , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/psicologia , Disfunção Cognitiva/cirurgia , Feminino , Humanos , Cirrose Hepática/diagnóstico , Cirrose Hepática/psicologia , Transplante de Fígado/psicologia , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida/psicologia , Fatores de Risco , Resultado do Tratamento
17.
Holist Nurs Pract ; 35(3): 150-157, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33853099

RESUMO

This randomized controlled clinical trial was conducted to determine the effect of music therapy on fatigue, comfort and vital signs of the liver transplant patients. The study sample comprised 120 adult patients (60 in the experimental and 60 in the control group) who met the inclusion criteria and agreed to participate in the study. In the experimental group, the researcher performed music therapy. After applying music therapy once to patients for 30 minutes, their fatigue, comfort, and vital signs were evaluated. No treatment was performed in the control group. According to music therapy follow-ups after liver transplantation, mean scores of fatigue levels were lower, comfort levels were higher, and vital signs were normal, with a statistical significance in the experimental group compared with the control group in all measurements before and after music therapy (P < .001). The study should be repeated using different parameters.


Assuntos
Fadiga/terapia , Musicoterapia/normas , Conforto do Paciente/normas , Adulto , Fadiga/psicologia , Feminino , Humanos , Transplante de Fígado/métodos , Transplante de Fígado/psicologia , Masculino , Pessoa de Meia-Idade , Musicoterapia/métodos , Conforto do Paciente/estatística & dados numéricos , Complicações Pós-Operatórias/prevenção & controle , Complicações Pós-Operatórias/psicologia , Sinais Vitais/fisiologia
18.
J Perianesth Nurs ; 36(1): 81-85, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33158746

RESUMO

PURPOSE: This study was conducted to analyze the effects of a therapeutic play/play therapy (TP/PT) program on anxiety levels and fear of medical procedures in children with liver transplant. DESIGN: The study had a pretest-posttest quasi-experimental design. METHODS: Sixty-five children aged between 6 and 12 years were included in this study. A children's information form, the State-Trait Anxiety Inventory for Children, and the Medical Procedure Fear Scale were used for data collection. FINDINGS: The application of the TP/PT program resulted in a statistically significant decrease in the children's anxiety levels and fears about medical procedures (P = .001). CONCLUSIONS: The TP/PT program had a positive effect on the children's fear and anxiety levels regarding certain medical procedures. Pediatric nurses can use the TP/PT program to reduce children's anxiety and fears about medical procedures.


Assuntos
Ansiedade , Criança Hospitalizada , Medo , Transplante de Fígado , Ludoterapia , Ansiedade/prevenção & controle , Criança , Criança Hospitalizada/psicologia , Humanos , Transplante de Fígado/psicologia , Enfermagem Pediátrica , Avaliação de Programas e Projetos de Saúde , Resultado do Tratamento
19.
Am J Transplant ; 20(11): 3042-3050, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32515125

RESUMO

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.


Assuntos
COVID-19/epidemiologia , Coragem , Medo/psicologia , Falência Hepática/cirurgia , Transplante de Fígado/psicologia , SARS-CoV-2 , Transplantados/psicologia , Idoso , Atitude , Comorbidade , Feminino , Seguimentos , Alemanha/epidemiologia , Humanos , Falência Hepática/epidemiologia , Falência Hepática/psicologia , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Risco , Listas de Espera
20.
Psychosomatics ; 61(2): 127-134, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31928784

RESUMO

BACKGROUND: The Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT) is a comprehensive instrument developed to accurately assess the main pretransplant psychosocial risk factors that may impact transplant outcomes. OBJECTIVE: As neither established assessment procedures nor standardized tools designed to perform pretransplant psychosocial evaluation are currently available in Italy, the present study was designed to develop and preliminarily validate the Italian version of the SIPAT. METHODS: First, our team developed the Italian version of the SIPAT, following standard forward-back translation procedures. Then, the Italian version of the SIPAT was retrospectively and blindly applied to 118 randomly selected transplant cases (40 heart, 40 lung, and 38 liver) by 2 independent examiners. Information about the patients' final transplant listing recommendation (i.e., listing vs. deferral) was independently collected from the respective transplant teams. RESULTS: The inter-rater reliability of the Italian version of the SIPAT scores was substantial (Cohen's kappa = 0.77; P < 0.001). Moreover, the predictive value of the SIPAT ratings on the final transplant listing recommendation (i.e., listing vs. deferral) for each examiner was significant (both P < 0.05). CONCLUSION: Current findings suggest that SIPAT is a promising and reliable instrument in its Italian version. Given these excellent psychometric characteristics, the use of the SIPAT as part of the pretransplant psychosocial evaluation in Italian medical settings is highly encouraged.


Assuntos
Transplante de Órgãos/psicologia , Determinação da Personalidade/estatística & dados numéricos , Funcionamento Psicossocial , Adulto , Comparação Transcultural , Feminino , Transplante de Coração/psicologia , Humanos , Itália , Transplante de Fígado/psicologia , Transplante de Pulmão/psicologia , Masculino , Programas de Rastreamento/estatística & dados numéricos , Variações Dependentes do Observador , Valor Preditivo dos Testes , Psicometria/estatística & dados numéricos , Reprodutibilidade dos Testes , Fatores de Risco , Resultado do Tratamento
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