Association of the Stanford Integrated Psychosocial Assessment for Transplant and 1-Year Outcome of Living Kidney Transplantation in Japan.

BACKGROUND: Because most kidney transplantations in Japan are performed on the basis of living donors, after-transplant outcomes should achieve optimum results, overcoming participants' possible reduced adherence. OBJECTIVE: To investigate the association between the Japanese version of the Stanford Integrated Psychosocial Assessment for Transplantation (SIPAT-J) and outcomes, 1 year after the patient's living kidney transplant (LKT). METHODS: The prospective cohort study was undertaken at Tokyo Women's Medical University Hospital from January 2020 to July 2021, with a 1-year follow-up period. The SIPAT-J assesses 18 psychosocial risk factors: (1) Patient's Readiness Level and Illness Management (SIPAT A), (2) Social Support System Level of Readiness (SIPAT B), (3) Psychological Stability and Psychopathology (SIPAT C), and (4) Lifestyle and Effect of Substance Use (SIPAT D). The evaluators, a psychiatrist and 3 clinical psychologists, conducted an independent, blinded application of the SIPAT-J using participants' medical records. The study focused on physical composite outcomes, psychiatric outcomes, and nonadherent behaviors. RESULTS: The participants were 173 LKT recipients (median age [interquartile range], 51 [38-59]); 67.1% were male and 67.1% were employed. The median (interquartile range) SIPAT scores were SIPAT A [7 (5-9)], SIPAT B [7 (5-9)], SIPAT C [2 (0-4)], SIPAT D [3 (3-4)], and SIPAT total [20 (16-23)]. The physical composite outcome was 25 (14.5%), psychiatric outcome 9 (5.2%), and nonadherent behavior 17 (9.8%). SIPAT C (odds ratio = 1.34, 95% confidence interval = 1.06-1.72, P = 0.02) was significantly associated with the psychiatric outcome. SIPAT B (odds ratio = 1.49, 95% confidence interval = 1.12-1.98, P = 0.01) and SIPAT total (odds ratio = 1.13, 95% confidence interval = 1.03-1.24, P = 0.01) were significantly associated with nonadherent behaviors. There was no significant association between the SIPAT and physical composite outcomes. CONCLUSION: This study is the first to examine the association between SIPAT and physical and psychiatric outcomes 1 year after LKT, controlling for follow-up periods and factors other than SIPAT. Comprehensive psychosocial assessment before LKT and early identification of factors that may negatively affect transplant success can allow targeted interventions to be implemented and increase the likelihood of favorable recipient outcomes.

Hybrid delivery of behavioral health screening and prevention intervention for pediatric heart transplant recipients and families: A randomized pilot study.

BACKGROUND: A significant number of pediatric heart transplant recipients and their families experience post-traumatic stress symptoms following transplantation, which can impact recipient behavioral and medical health outcomes. Preventive behavioral health interventions may improve outcomes, especially if interventions can be delivered at a distance to decrease barriers to mental health care. This pilot study examined the acceptability and accessibility of an evidence-informed resilience training program delivered using a video telehealth platform. A secondary aim was to assess the preliminary efficacy of the intervention on recipient behavioral health outcomes, perceived barriers to recipient medication adherence, parent behavioral health outcomes, and family functioning. METHODS: Seventeen heart transplant recipients (8-18 years old) and their families were recruited and randomly assigned to a treatment as usual (n = 8) or an intervention group (n = 9). Baseline assessment data collected included demographic information and validated behavioral health measures. Follow-up assessments included the validated measures and acceptability and satisfaction ratings. RESULTS: The study demonstrated that the program has high acceptability by recipients and parents, and a positive impact on recipients and parents, including significant reductions in youth behavioral difficulties as well as parent depression and post-traumatic stress symptoms. CONCLUSIONS: Results of this study are promising and call for further evaluation of hybrid delivery models for behavioral health screening and prevention interventions for pediatric heart transplant recipients and their families.

Psychosocial Characteristics of Patients Evaluated for Kidney, Liver, or Heart Transplantation.

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.

A qualitative study of life with a left ventricular assist device as a bridge to transplant: A new normal.

OBJECTIVE: To explore the lived experiences of individuals with a left ventricular assist device (LVAD) as a bridge to transplant. DESIGN: A qualitative descriptive study of ten patients in the Midwestern United States between 30 and 60 years, with a device implanted between six and 18 months were interviewed. A semi-structured interview guide was utilized to elicit a detailed account of individuals living with an LVAD. Content analysis with an inductive coding approach was used to analyze the interview transcripts. FINDINGS: Three major themes, encompassing several sub themes emerged from the data. (1) physical adjustments (reality shock, carrying the batteries, a new routine, showering, and sleep) (2) emotions (decision making, attitude, gratitude, and uncertainty) (3) psychosocial aspects (intimacy adaptations, self-perception, and perception by others) CONCLUSION: The reality of living with a device was 'not normal' but with time it became their new normal. Findings from this study will inform healthcare professionals (HCP) on the lived experience of patients with LVADs. This new knowledge will assist HCPs to engage in realistic discussions with patients contemplating an LVAD implant. Sharing the challenges of patients with LVADs will help future transplant recipients to be better prepared for their new lifestyle.

Life experiences of adult heart transplant recipients: a new life, challenges, and coping.

PURPOSE: The process during and after heart transplantation is quite complicated, and studies addressing patient experiences are needed. Heart transplantation particularly affects the recipients' activities of daily living and exposes them to various complications. The aim of this study is to explore the experiences of heart transplant recipients during and after heart transplantation. METHODS: This qualitative, phenomenological research was conducted with 11 heart transplant recipients in the university hospital, which is one of the 14 heart transplantation centers in Turkey. The data were collected through in-depth semi-structured interviews in a private room that ensured both the comfort of the participants and the necessary conditions for safe data collection. The interviews were recorded using an audio recorder, transcribed, and then analyzed using inductive content analysis. Data collection was terminated after the 11th interview when the data reached the saturation point. RESULTS: The study data were categorized into the following three main themes and subthemes: (1) a new life with a new heart; an opportunity arising at an unexpected time, heart donation, and transplantation as a value, (2) challenges; management of medication therapy and side effects, emotion management, maintaining social relations, and social stigma, and (3) coping; faith in God and praying, responsibility of living with a blessing (donated heart), health professional support, family support, and peer counseling. In line with these themes, expressions of value given to new life and gratitude to heart transplantation were important. The availability and diversity of support sources came to the fore in coping. Social stigma expressions of especially male patients were remarkable in challenges. CONCLUSION: At the end of the study, the experiences of heart transplant recipients were obtained regarding a new life with a new heart, challenges, and coping. The study results provide an insight into the challenges that the heart transplant recipients face and their coping strategies, guiding the healthcare professionals. The challenges and relevant coping strategies of heart transplant recipients may be integrated into clinical practice and may help plan patient's care. The results may also be used to design and implement an intervention program to improve care for these patients.

Association between caregivers' coping and children's psychiatric symptoms in the heart transplantation process: A pilot study.

Our aim was to investigate whether there is an association between caregivers' coping and children's psychiatric symptoms and quality of life in adolescent heart transplant (HTx) recipients and HTx candidates with left ventricular assist device (LVAD). Fourteen patients were recruited for this pilot study (HTx (n = 8), LVAD (n = 6)). Schedule for Affective Disorders and Schizophrenia for School Aged Children, Present and Lifetime Version (K-SADS) was administered to detect the psychiatric diagnosis of patients. Children's Depression Inventory (CDI), State-Trait Anxiety Inventory, and Pediatric Quality of Life Inventory (PedsQL) were completed by adolescents; Brief Coping Styles Inventory by their caregivers. Six of the participants had an internalizing disorder. Optimistic coping strategy score was significantly higher in the caregivers of adolescents without an internalizing disorder than caregivers of those with an internalizing disorder (U = 2.500, P = .005). Utilizing Spearman's correlation, caregivers' optimistic approach (rho = -0.736, P = .004), and self-confident approach (rho = -0.634, P = .020) had significant negative correlations with children's CDI scores. Moreover, caregivers' optimistic approach score had a significant positive correlation with children's PedsQL score (rho = 0.563, P = .045). According to our preliminary results, it seems that caregivers' optimistic and self-confident coping strategies may be associated with fewer internalizing symptoms and a better quality of life in adolescents in the HTx process. A future multicentered longitudinal study will be planned to assess the effect of caregivers' coping strategies on the psychological adjustment of these children.

The Preimplantation Psychosocial Evaluation and Prediction of Clinical Outcomes During Mechanical Circulatory Support: What Information Is Most Prognostic?

BACKGROUND: Psychosocial evaluations are required for long-term mechanical circulatory support (MCS) candidates, no matter whether MCS will be destination therapy (DT) or a bridge to heart transplantation. Although guidelines specify psychosocial contraindications to MCS, there is no comprehensive examination of which psychosocial evaluation domains are most prognostic for clinical outcomes. We evaluated whether overall psychosocial risk, determined across all psychosocial domains, predicted outcomes, and which specific domains appeared responsible for any effects. METHODS: A single-site retrospective analysis was performed for adults receiving MCS between April 2004 and December 2017. Using an established rating system, we coded psychosocial evaluations to identify patients at low, moderate, or high overall risk. We similarly determined risk within each of 10 individual psychosocial domains. Multivariable analyses evaluated whether psychosocial risk predicted clinical decisions about MCS use (DT versus bridge), and postimplantation mortality, transplantation, rehospitalization, MCS pump exchange, and standardly defined adverse medical events (AEs). RESULTS: In 241 MCS recipients, greater overall psychosocial risk increased the likelihood of a DT decision (odds ratio, 1.76; P = 0.017); and postimplantation pump exchange and occurrence of AEs (hazard ratios [HRs] ≥ 1.25; P ≤ 0.042). The individual AEs most strongly predicted were cardiac arrhythmias and device malfunctions (HRs ≥ 1.39; P ≤ 0.032). The specific psychosocial domains predicting at least 1 study outcome were mental health problem severity, poorer medical adherence, and substance use (odds ratios and HRs ≥ 1.32; P ≤ 0.010). CONCLUSIONS: The psychosocial evaluation predicts not only clinical decisions about MCS use (DT versus bridge) but important postimplantation outcomes. Strategies to address psychosocial risk factors before or soon after implantation may help to reduce postimplantation clinical risks.

Health-Related Quality of Life of Heart Transplant Recipients Living in a Developing Country.

BACKGROUND: Heart transplantation (HT) is the treatment for patients with end-stage heart failure (HF). It is hoped that the procedure increases both survival rates and the level of health-related quality of life (HRQoL), which may, however, be compromised by post-transplant complications. The objective of this study was to analyze the level of HRQoL in HT recipients and considered the influence of variables from social and clinical contexts. MATERIALS AND METHODS: This is a cross-sectional study of HT recipients. The level of HRQoL was assessed by the World Health Organization Quality of Life-BREF (WHOQOL-BREF) questionnaire during outpatient consultation. RESULTS: This study analyzed 186 HT recipients from a total of 192 eligible patients. The median level of HRQoL was ≥67.8 points in all domains of the WHOQOL-BREF questionnaire (physical, psychological, social relationships, and environment) and general score of perception of the level of quality of life (QoL) and health. Variables such as age, ethnicity, per capita income, time from last hospitalization, number of current medications, and number of hospitalizations after HT were significantly related to at least 1 domain of the WHOQOL-BREF. CONCLUSION: In this study, HRQoL of HT recipients living in a developing country can be considered satisfactory given the high score obtained in all domains of WHOQOL-BREF and in the perception of the level of QoL and health.

Attitudes toward xenotransplantation: A survey of parents and pediatric cardiac providers.

BACKGROUND: Scientific advancements are occurring in cardiac xenotransplantation (XTx). However, there have been religious and social concerns surrounding this allotransplantation alternative. The purpose of this study was to explore the acceptance of XTx among stakeholders of the congenital heart disease (CHD) community. METHODS: A Likert-scale anonymous survey was distributed to physicians and nurses who care for children with CHD and parents of children with CHD. Psychosocial and clinical attitudes were compared across all groups to identify differences, and regression analysis was performed to identify factors associated with XTx acceptance. RESULTS: A total of 297 responded to the survey: 134 physicians, 62 nurses, and 101 parents. Potential acceptance of XTx if outcomes were similar to allotransplantation was high overall (75.3%), but different between the groups (physicians 86%; nurses 71%, parents 64%; P < .0001). Regression analysis showed respondents who reported religion would influence medical decision making (OR 0.48; 95%CI 0.24-0.97) and those who would not use a pig heart transplant as a bridge until a human heart became available were less likely to accept XTx (OR 0.09; 95%CI 0.04-0.21). Psychosocial concerns to XTx were minimal but were also associated with XTx acceptance particularly among parents (OR 0.17; 95%CI 0.03-0.80). CONCLUSIONS: Potential acceptance of XTx is high, assuming results are similar to allotransplantation. Religious beliefs and attitudes toward the use of XTx as a bridge to allotransplant may present barriers to XTx acceptance. Future research is needed to assess potential attitude differences in light of ethical, psychosocial, and religious objections to XTx.

Prospective single-centre clinical observational study on electronically monitored medication non-adherence, its psychosocial risk factors and lifestyle behaviours after heart transplantation: a study protocol.

INTRODUCTION: In heart transplant recipients (HTRs), non-adherence (NA) to immunosuppressive (IS) medication and to recommended lifestyle behaviours are a common phenomenon and associated with higher risk of allograft rejection, organ loss and mortality. Risk factors for NA are highly diverse and still insufficiently researched. Precise measures of NA and an accurate understanding of its aetiology are of undisputable importance to detect patients at risk and intervene accordingly. The aim of this study is to assess the accuracy and concordance of different measures for NA as well as to determine potential risk factors. METHODS AND ANALYSIS: This is a single-centre prospective observational trial. HTRs who are at least aged 18 are no less than 6 months post-transplant and receive tacrolimus (Prograf or Advagraf), cyclosporine (Sandimmun) or everolimus (Certican) as their prescribed IS medication are eligible for participation. We only include patients during the phase of medication implementation. At study enrolment, we assess depression, health-related quality of life, self-efficacy, social support, attachment, experiences and attitudes towards IS medication, emotional responses after transplantation, satisfaction with information about IS medication and perceptions and beliefs about medications. We further ask patients to rate their lifestyle behaviours concerning alcohol, smoking, diet, physical activity, sun protection and appointment keeping via questionnaires. Three different measurement methods for NA are applied at T0: self-reports, physician's estimates and IS trough levels. NA is monitored prospectively using an electronic multicompartment pillbox (MEMS, VAICA) over a 3-month period. Meanwhile, participants receive phone calls every second week to obtain additional self-reports, resulting in a total of seven measurement points. ETHICS AND DISSEMINATION: The study was approved by the Clinical Ethics Committee of the University Hospital Erlangen (Friedrich-Alexander-University, Erlangen-Nürnberg). Written informed consent is attained from all participants. The results of this study will be published in peer-reviewed journals and presented at conferences. TRIAL REGISTRATION NUMBER: DRKS00020496.

The impact of psychiatric disorders on outcomes following heart transplantation in children.

Psychiatric disorders are common in pediatric HTx recipients. However, the impact of psychiatric comorbidities on patient outcomes is unknown. We aimed to assess the impact of disorders of adjustment, depression, and anxiety on HTx outcomes in children; hypothesizing that the presence of psychiatric disorders during or preceding HTx would negatively impact outcomes. All pediatric HTx recipients ≥8 years of age who survived to hospital discharge were identified from a novel linkage between the PHIS and SRTR databases (2002-2016). Psychiatric disorders were identified using ICD codes during or preceding the HTx admission. Post-transplant graft survival, freedom from readmission, and freedom from rejection were analyzed using the Kaplan-Meier method. Multivariable Cox proportional hazard models were used to adjust for covariates. A total of 1192 patients were included, of which 133 (11.2%) had depression, 197 (16.5%) had anxiety, and 218 (18.3%) had adjustment disorders. The presence of depression was independently associated with higher rates of readmission (60.9% vs 54.1% at 6 months) (AHR 1.63, 95% CI 1.22-2.18, P = .001) and inferior graft survival (70.2% vs 83.4% at 5 years) (AHR 1.62, 95% CI 1.14-2.3, P = .007). Anxiety was independently associated with higher rates of readmission (60.4% vs 53.9% at 6 months) (AHR 1.46, 95% CI 1.09-1.94, P = .01). Anxiety and depression in the pretransplant period are independently associated with outcomes following HTx in children. Evaluation and management of psychiatric comorbidities represents an important component of care in this vulnerable population.

Health-related quality of life after pediatric heart transplantation in early childhood.

BACKGROUND: There is limited information about HRQL after pediatric heart transplantation at a young age. METHODS: Prospective follow-up study of children who received a heart transplant at age ≤4 years. HRQL was assessed using the PedsQLTM 4.0 at age 4.5 years. This cohort was compared with healthy children, children with CHD, and with chronic conditions. Peri-operative factors associated with HRQL were also explored. RESULTS: Of 66 eligible patients, 15 (23%) died prior to the HRQL assessment and 2 (3%) were lost to follow-up, leaving 49 patients. Indication for transplantation was CHD in 27 (55%) and CMP in 22 (45%). Median age (IQR) at transplant was 9 (5-31) months. HRQL was significantly lower in transplanted children compared to population norms (65.3 vs 87.3, P < .0001), children with chronic conditions (65.3 vs 76.1, P = .001), and children with CHD (65.3 vs 81.1, P < .0001). Transplanted children with CHD had lower HRQL than those with a prior diagnosis of CMP (59.5 vs 72.5, P-value = .020). Higher creatinine pretransplant and higher lactate post-operatively were associated with lower HRQL. CONCLUSION: Children after heart transplant had significantly lower HRQL, as reported by their parents, than the normative population, children with chronic conditions, and children with CHD.

Level of Life Quality in Heart and Kidney Transplant Recipients: A Multicenter Study.

OBJECTIVE: The main objective of the researchers was to determine the level of life quality among heart and kidney transplant recipients depending on the time and type of the transplant. METHODS: The study was conducted using standardized questionnaires: the 36-Item Short-Form Health Survey, Life Orientation Test-Revised, and Hospital Anxiety and Depression Scale. The study included 146 recipients (109 heart transplant recipients and 37 kidney transplant recipients) from 1 to 26 years after the transplantation surgery (mean 9 years). RESULTS: The mean age of the study group was 52 years. The mean time since organ transplantation was 10 years for heart transplantation and 4.3 years for kidney transplantation. The study group obtained a slightly lower score for quality of life compared to the general population. In the Physical Component Summary (PCS), the study participants obtained the highest mean for the domain bodily pain (47.6), while the lowest score was in the domain role physical (41.82). As for the Mental Component Summary (MCS), the highest mean was obtained for the domain vitality (50.57), whereas the lowest one was for the domain role emotional (43.38). In 33% of the participants, risk of depression was identified. Statistically significant differences were observed depending on the type of the transplanted organ in the PCS for the domains general health, physical functioning, and bodily pain and the MCS for role emotional and social functioning. The statistically significant predictors for the PCS domain were the type of transplanted organ, recipients' age, and occurrence of anxiety. In turn, the predictor for the MCS was the occurrence of depression. CONCLUSIONS: The quality of life (QOL) assessment varies between kidney and heart transplant recipients. The QOL is determined by the recipients' age and the occurrence of anxiety and depression. The obtained QOL assessment results are slightly lower than those in the general population.

One-year follow-up of heart transplant recipient with cardiac rehabilitation: A case report.

INTRODUCTION: Heart transplantation (HT) is known to be the final therapy for patients with advanced heart failure; however, the exercise capacity of these patients remains under the aged-predicted value after HT. Many studies have described the effectiveness and safety of cardiac rehabilitation (CR) in HT recipients. Nevertheless, long-term follow-up data of HT recipients undergoing CR are insufficient, and there is a lack of evidence on the long-term effects of CR. In this case report, we present the long-term benefits of CR in an HT recipient, including serial follow-up clinical data over 1 year. PATIENT CONCERNS: A 48-year-old female patient underwent HT because of advanced dilated cardiomyopathy. DIAGNOSIS: Cardiopulmonary exercise test showed reduced exercise capacity and pulmonary function. The grip power and quadriceps muscle strength were also decreased after HT. INTERVENTIONS: The patient underwent a phase I CR program for 3 months, followed by a phase III CR program for 7 months. In the beginning, moderate-intensity continuous training was conducted. Thereafter, high-intensity interval training was implemented after a period of adjustment for interval training. OUTCOMES: The exercise capacity, 6-min walk distance, muscle strength, and vital capacity were improved after CR. CONCLUSION: CR in HT recipients may improve muscle strength and pulmonary function as well as exercise capacity, without serious cardiovascular complications. Phase III CR may help maintain exercise capacity in these patients.

Entre el pulsar y el morir: la vivencia de pacientes que esperan el trasplante cardíaco / Between pulse and dying: the experience of patients waiting for heart transplantation / Entre o pulsar e o morrer: a vivência de pacientes que esperam o transplante cardíaco

INTRODUCCIÓN: El trasplante es el enfoque patrón-oro en el tratamiento de la insuficiencia cardíaca, resultando en una mayor sobrevida y calidad de vida. Sin embargo, la alta demanda y escasez de donantes generan largas filas, en las que los pacientes experimentan sentimientos ambiguos de esperanza y frustación, en medio de la vida y la muerte. OBJETIVO: Comprender la vivencia en la cola de espera del trasplante cardíaco desde la perspectiva del paciente y su familia. MÉTODO: Investigación descriptiva y exploratoria, de abordaje cualitativo, realizada con 12 participantes: 6 pacientes que están en fila de espera para trasplante cardíaco y 6 familiares. En el programa Iramuteq (Interfaz de R para los Analyses Multimensionnelles de Textes et de Questionnaires), respondieron un guión de entrevista semiestructurado, que fue evaluado por medio de análisis textual en el software Iramuteq. RESULTADOS: Se evidenció que el descubrimiento del diagnóstico y de la necesidad de trasplante está impregnado por sentimientos de tristeza y miedo, que demandan reorganización de la estructura familiar y uso de diferentes estrategias de enfrentamiento. Entre las dificultades vivenciadas en la espera por un órgano se contempla el surgimiento de intercurrencias clínicas, que pueden quitarle la vida o imposibilitar la cirugía, y el constante rechazo de la familia de posibles donantes. CONCLUSIÓN: La cola de espera para trasplante cardíaco se conFigura como un momento de "carrera contra el tiempo por la vida", impregnada por ansiedad, esperanza y frustración, en la que el apoyo familiar es fundamental. Se hace fundamental también la inversión en campañas de donación de órganos y capacitación de profesionales para hacer un abordaje correcto a los familiares de posibles donantes, acogiendo su duelo y aclarando sus dudas

INTRODUCTION: Transplantation is the gold standard approach in the treatment of heart failure, resulting in longer survival and quality of life. However, high demand and donor shortage lead to long queues in which patients experience ambiguous feelings of hope and frustration between life and death. OBJECTIVE: To understand the experience in the heart transplant waiting list from the perspective of patients and their families. Method: Descriptive and exploratory research with a qualitative approach, conducted with 12 participants: six patients who were waiting for heart transplantation and six family members. They answered a semi-structured interview script, which was evaluated by textual analysis using the Iramuteq software (Interface for R for Les Multesanalysis de Textes et de Questionnaires). RESULTS: It was evident that the discovery of the diagnosis and the need for transplantation was permeated by feelings of sadness and fear, requiring reorganization of the family structure and use of different coping strategies. The difficulties experienced in waiting for an organ include the emergence of clinical complications that can take the life of the patient or prevent surgery, and the constant refusal of possible donors on the part of the family. CONCLUSION: The waiting list for heart transplantation is a moment of "race against time for life", permeated by anxiety, hope and frustration, in which family support is essential. It is also essential to invest in organ donation campaigns and training professionals to make a correct approach to families when it comes to talk about potential donors, embracing their grief and clarifying their doubts

INTRODUÇÃO: O transplante é a abordagem padrão-ouro no tratamento da insuficiência cardíaca, resultando em maior sobrevida e qualidade de vida. Entretanto, a alta demanda e escassez de doadores geram longas filas, nas quais pacientes vivenciam sentimentos ambíguos de esperança e frustação, em meio a díade vida e morte. OBJETIVO: Compreender a vivência na fila de espera do transplante cardíaco a partir da perspectiva do paciente e sua família. MÉTODO: Pesquisa descritiva e exploratória, de abordagem qualitativa, realizada com 12 participantes: seis pacientes que estão em fila de espera para transplante cardíaco e seis familiares. Eles responderam um roteiro de entrevista semiestruturado, que foi avaliado por meio de análise textual no software Iramuteq (Interface de R pour les Analyses Multimensionnelles de Textes et de Questionnaires). RESULTADOS: Evidenciou-se que a descoberta do diagnóstico e da necessidade de transplante é permeada por sentimentos de tristeza e medo, que demandam reorganização da estrutura familiar e uso de diferentes estratégias de enfrentamento. Entre as dificuldades vivenciadas na espera por um órgão contemplam-se o surgimento de intercorrências clínicas, que podem lhe tirar a vida ou impossibilitar a cirurgia, e a constante recusa da família de possíveis doadores. CONCLUSÃO: A fila de espera para transplante cardíaco conFigura-se como um momento de "corrida contra o tempo pela vida", permeada por ansiedade, esperança e frustração, na qual o apoio familiar é fundamental. Faz-se fundamental também o investimento em campanhas de doação de órgãos e capacitação de profissionais para fazer uma abordagem correta aos familiares de possíveis doadores, acolhendo o seu luto e esclarecendo suas dúvidas

Manifestations of health anxiety in patients with heart transplant.

BACKGROUND: Health anxiety is an important component of psychological adjustment to chronic medical conditions. However, it has been overlooked after heart transplantation. OBJECTIVES: To examine demographic, clinical, and psychological correlates of health anxiety in heart transplanted patients and to compare health anxiety between patients and a sample of matched controls from the general population. METHODS: The study design was observational. Seventy-three cardiac recipients and 73 controls completed the Illness Attitude Scales and the Symptom Questionnaire. Patients' clinical parameters were collected. RESULTS: Health anxiety was significantly associated with clinical variables suggesting a worse outcome, especially a higher NYHA class and occurrence of cancer. Compared to controls, patients had significantly more "hypochondriacal responses" (32.9% vs. 16.4%), an index of clinically significant health anxiety. CONCLUSIONS: Health anxiety affects a significant subset of heart transplanted patients and deserves a thorough assessment. Cardiologists' and nurses' specific communication skills and psychological treatment strategies may be necessary.

Oral health-related quality of life of patients after heart transplantation and those with heart failure is associated with general health-related quality of life: a cross-sectional study.

PURPOSE: The aim of this cross-sectional study was to examine the oral health-related quality of life (OHRQoL) in patients after heart transplantation (HTx) and those with heart failure (HF). METHODS: In total, 186 participants (HTx: 104, HF: 82) were recruited from the University Department for Cardiac Surgery, Leipzig Heart Centre, Germany. OHRQoL was assessed with the German short form of the oral health impact profile (OHIP-G14). Health-related quality of life (HRQoL) was evaluated using the short form 36 survey (SF-36). Furthermore, the dental and periodontal treatment need was recorded. RESULTS: With an OHIP-G14 sum score of 6.58 ± 6.40 [5; 2.5-8] in the HTx group and 5.54 ± 5.47 [5; 2-7] in the HF group, no clinically relevant or statistically significant difference was apparent (p = 0.39). The SF-36 scales for physical functioning, role-physical, general health and vitality were significantly worse in the HF group compared with the HTx group (pi < 0.01). A worse SF-36 physical component summary was significantly associated with a higher OHIP-G14 sum score (HTx: p < 0.01, HF: p = 0.04). In the HTx group, a significant association was also observed for the mental component summary (p < 0.01). Multiple regression analysis revealed physical component summary (p = 0.04) and mental component summary (p < 0.01) in HTx, and physical component summary (p = 0.02), mental component summary (p = 0.02) and smoking (p < 0.01) as significant predictors for OHIP G14 in HF. CONCLUSION: The OHRQoL in HF and HTx patients appears to be mainly associated with general HRQoL. Therefore, multidisciplinary dental care concepts may be recommended to improve oral health conditions in these patients.

Health-related quality of life of transplant recipients: a comparison between lung, kidney, heart, and liver recipients.

BACKGROUND: Quality of life and psychological responses to transplantation are constructs used to assess various psychosocial aspects after organ transplantation. The purpose of this study is to compare physical, psychological, social, and environmental quality of life between recipients of four organs: liver, lung, heart, and kidney. METHODS: In order to compare the four types of quality of life and emotional responses post-transplant, HRQOL and TxEQ questionnaires were administered to 427 transplant recipients. RESULTS: Heart and liver recipients report significantly higher health-related quality of life than lung and kidney recipients. Heart and lung patients report significantly fewer concerns and worries than liver and kidney patients. New additional variables were explored in our study: psychological connection to the living donor/deceased donor's family and commitment to them. We also found that heart recipients feel their personality traits changed, postoperative. CONCLUSIONS: The contribution of our study was the finding that ethno-religious and psychosocial variables have a positive effect on four dimensions of HRQOL. It may be useful to design psychological support interventions specifically adapted to patients after organ transplantation that aim at enhancing patients' HRQOL and alleviating negative emotional responses.