The International Society for Heart and Lung Transplantation Guidelines for the Management of Pediatric Heart Failure (Update From 2014).

Pediatric heart failure (HF) secondary to cardiomyopathies, acquired heart disease, and congenital heart disease is associated with significant morbidity and mortality. These guidelines represent an update from the International Society for Heart and Lung Transplantation guidelines for the management of pediatric HF that were published in 2014 and incorporate interval advancements in medical therapies and new approaches in the evaluation and management of children with HF.

Real-world use of intravenous iron sucrose in children with cardiac disease.

Iron deficiency has been associated with heart failure severity and mortality in children and adults. Intravenous iron therapy has been associated with improved outcomes for adults with heart failure. However, little is known about its impact and safety in children.

End-of-Life Course and Subspecialty Palliative Care Involvement for Children on Mechanical Circulatory Support: Five-Center Retrospective Cohort Study from the United States, 2015-2020.

Objectives: To characterize end-of-life (EOL) care and subspecialty palliative care (SPC) involvement in children with heart disease supported on mechanical circulatory support (MCS), including ventricular assist devices (VADs) and extracorporeal membrane oxygenation (ECMO).

Design: A multicenter retrospective study describing clinical characteristics, SPC involvement and timing, and EOL circumstances.

Setting: Five U.

The Impact of Fontan Circulatory Failure on Heart Transplant Survival: A 20-Center Retrospective Cohort Study.

Background: Fontan circulatory failure (FCF) is a chronic state in palliated single ventricle heart disease with high morbidity and mortality rates, including heart failure, multisystem end-organ disease, and need for heart transplant. Specific FCF morbidities have not been rigorously defined, limiting study of how FCF morbidities affect pre-heart transplant and post-heart transplant outcomes. We hypothesized that FCF-related morbidities affect survival from heart transplant waitlisting through 1 year after heart transplant.

Donor History of Drug Use and Graft Survival in Pediatric Heart Transplant Recipients.

Importance: Older children awaiting a heart transplant (HT) sometimes receive a heart offer from a donor with a history of drug use (HDU). The effect of using such donor hearts on posttransplant survival in pediatric recipients is unclear.

Objective: To assess the association of using hearts from donors with HDU on posttransplant graft survival in pediatric HT recipients.

From worries to resilience: a qualitative study of the psychosocial experiences of diverse adolescents and young adults with heart failure and their caregivers.

Background And Objectives: Despite advances in treatment and outcomes for paediatric heart failure, both physical and psychosocial comorbidities remain notable among this patient population. We aimed to qualitatively describe the psychosocial experiences of adolescent and young adults with heart failure and their caregivers' perceptions, with specific focus on personal challenges, worries, coping skills, and resilience.

Methods: Structured, in-depth interviews were performed with 16 adolescent and young adults with heart failure and 14 of their caregivers.

Socioeconomic Status and Major Adverse Transplant Events in Pediatric Heart Transplant Recipients.

Importance: Low socioeconomic status (SES) has been associated with higher risk of rejection and graft loss in pediatric heart transplant (HT) recipients. The association of SES with other posttransplant morbidities is unknown.

Objective: To assess whether low SES is associated with higher risk of a major adverse transplant event (MATE) among pediatric HT recipients.

Pathology of explanted pediatric hearts: An 11-year study. Population characteristics and implications for outcomes.

Background: As more pediatric patients become candidates for heart transplantation (HT), understanding pathological predictors of outcome and the accuracy of the pretransplantation evaluation are important to optimize utilization of scarce donor organs and improve outcomes. The authors aimed to investigate explanted heart specimens to identify pathologic predictors that may affect cardiac allograft survival after HT.

Methods: Explanted pediatric hearts obtained over an 11-year period were analyzed to understand the patient demographics, indications for transplant, and the clinical-pathological factors.

The experience of fathers of children hospitalised with advanced heart disease.

Background: There are little reported data on the perspectives of fathers caring for children with chronic conditions. Although survival of children with advanced heart disease has improved, long-term morbidity remains high. This study describes the experience and prognostic awareness of fathers of hospitalised children with advanced heart disease.

The family burden of paediatric heart disease during the chronic phase of illness.

Background: CHD is a lifelong condition with a significant burden of disease to patients and families. With increased survival, attention has shifted to longer-term outcomes, with a focus on social determinants of health. Among children with CHD, socioeconomic status is associated with disparities in outcomes.

Medium-term Outcomes in Pediatric Heart Transplant Recipients Managed Using a Steroid Avoidance Immune Suppression Protocol.

Background: Short-term outcomes using steroid avoidance immune suppression are encouraging in pediatric heart transplant (HT) recipients at low risk of antibody-mediated rejection. We assessed medium-term outcomes in pediatric HT recipients initiated on a steroid avoidance protocol at our institution using surveillance biopsies.

Methods: All primary HT recipients during 2006-2020 who did not have a donor-specific antibody were eligible for immune suppression consisting of 5-d Thymoglobulin/steroid induction followed by a tacrolimus-based, steroid-free regimen.

The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life.

Purpose: Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL and grief. We aimed to compare parent-perceived child suffering between diagnostic groups and identify related factors.

Medical and End-of-Life Decision-Making Preferences in Adolescents and Young Adults with Advanced Heart Disease and Their Parents.

Importance: Despite high disease morbidity and mortality and complex treatment decisions, little is known about the medical and end-of-life decision-making preferences of adolescents and young adults (AYA) with advanced heart disease. AYA decision-making involvement is associated with important outcomes in other chronic illness groups.

Objective: To characterize decision-making preferences of AYAs with advanced heart disease and their parents and determine factors associated with these preferences.

Apixaban Anticoagulation in Children and Young Adults Supported With the HeartMate 3 Ventricular Assist Device.

There is a growing population of pediatric and adult patients supported with the HeartMate 3 ventricular assist device (HM3 VAD) all of whom require anticoagulation. Apixaban is an anticoagulant requiring less testing than warfarin which has been shown to be effective in other indications. We report five pediatric and young adult patients managed on HM3 VAD with apixaban anticoagulation for 1589 days of VAD support between January 6, 2019 and January 7, 2022.

Patient and parent-reported outcomes in paediatric ventricular assist device support: a multi-center ACTION learning network feasibility and pilot experience.

Background: Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality and can be used to inform treatment. Despite the widescale use of PROs in adult cardiology, they are underutilised in paediatric cardiac care. This study describes a six-center feasibility and pilot experience implementing PROs in the paediatric and young adult ventricular assist device population.

Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association.

Aim: This summary from the American Heart Association provides guidance for the provision of primary and subspecialty palliative care in pediatric congenital and acquired heart disease.

Methods: A comprehensive literature search was conducted from January 2010 to December 2021. Seminal articles published before January 2010 were also included in the review.

Prognostic Value of Exercise Stress Echocardiography in Pediatric Cardiac Transplant Recipients.

Background: Cardiac allograft vasculopathy (CAV) is a leading cause of long-term morbidity and mortality in pediatric heart transplant (HTx) recipients. Exercise stress echocardiography (ESE) has been shown to be useful in the detection of angiographically confirmed coronary artery disease in children. However, the prognostic utility of ESE for prediction of cardiac events in HTx survivors is unknown.

Parent-Provider Communication in Hospitalized Children with Advanced Heart Disease.

Communication between parents and providers of children with cardiac disease is essential to parental decision-making. This study explored how parents of hospitalized children with advanced heart disease perceived communication with their child's providers. We performed a prospective survey study of parents and physicians of children with advanced heart disease age 30 days to 19 years admitted to the hospital for > 7 days over a 1-year period at a single institution (n = 160 parent-provider pairs).

Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit.

Importance: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life.

Objectives: To evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances.

The Surprise Question as a Trigger for Primary Palliative Care Interventions for Children with Advanced Heart Disease.

There is significant uncertainty in describing prognosis and a lack of reliable entry criteria for palliative care studies in children with advanced heart disease (AHD). This study evaluates the utility of the surprise question-"Would you be surprised if this child died within the next year?"-to predict one-year mortality in children with AHD and assess its utility as entry criteria for future trials. This is a prospective cohort study of physicians and nurses caring for children (1 month-19 years) with AHD hospitalized ≥ 7 days.

Obesity and dyslipidemia predict cardiac allograft vasculopathy and graft loss in children and adolescents post-heart transplant: A PHTS multi-institutional analysis.

Background: Obesity and dyslipidemia afflict children of all ages. We explored the prevalence of obesity and dyslipidemia in pediatric heart transplant (HT) recipients and its effects on cardiac allograft vasculopathy (CAV) and survival.

Methods: This study included primary HT recipients (≤18 years) transplanted between 01/1996 and 12/2018 included in the Pediatric Heart Transplant Society database.