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ImportanceDespite 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.ObjectiveTo characterize decision-making preferences of AYAs with advanced heart disease and their parents and determine factors associated with these preferences.Design, Setting, and ParticipantsCross-sectional survey between July 2018 and April 2021 at a single-center heart failure/transplant service at a Midwestern US children’s hospital. Participants were AYAs aged 12 to 24 years with heart failure, listed for heart transplantation, or posttransplant with life-limiting complications and a parent/caregiver. Data were analyzed from May 2021 to June 2022.Main Outcomes and MeasuresSingle-item measure of medical decision-making preferences, MyCHATT, and Lyon Family-Centered Advance Care Planning Survey.ResultsFifty-six of 63 eligible patients enrolled in the study (88.9%) with 53 AYA-parent dyads. Median (IQR) patient age was 17.8 (15.8-19.0) years; 34 (64.2%) patients were male, and 40 patients (75.5%) identified as White and 13 patients (24.5%) identified as members of a racial or ethnic minority group or multiracial. The greatest proportion of AYA participants (24 of 53 participants [45.3%]) indicated a preference for active, patient-led decision-making specific to heart disease management, while the greatest proportion of parents (18 of 51 participants [35.3%]) preferred they and physician(s) make shared medical decisions on behalf of their AYA, representing AYA-parent decision-making discordance (χ2 = 11.7; P = .01). Most AYA participants stated a preference to discuss adverse effects or risks of treatment (46 of 53 participants [86.8%]), procedural and/or surgical details (45 of 53 participants [84.9%]), impact of condition on daily activities (48 of 53 participants [90.6%]), and their prognosis (42 of 53 participants [79.2%]). More than half of AYAs preferred to be involved in end-of-life decisions if very ill (30 of 53 participants [56.6%]). Longer time since cardiac diagnosis (r = 0.32; P = .02) and worse functional status (mean [SD] 4.3 [1.4] in New York Heart Association class III or IV vs 2.8 [1.8] in New York Heart Association class I or II; t-value = 2.7; P = .01) were associated with a preference for more active, patient-led decision-making.Conclusions and RelevanceIn this survey study, most AYAs with advanced heart disease favored active roles in medical decision-making. Interventions and educational efforts targeting clinicians, AYAs with heart disease, and their caregivers are needed to ensure they are meeting the decision-making and communication preferences of this patient population with complex disease and treatment courses.

BACKGROUND: Adverse effects of clinician burnout has been studied across multiple specialties, however, there have been no studies examining rates of burnout among pediatric solid organ transplant teams. This study aimed to measure burnout, work exhaustion, professional fulfillment, and post-traumatic stress symptoms among clinicians and administrators practicing in this high stress field. METHODS: This cross-sectional study utilized a 50 item web-based survey that included the Personal Fulfillment Index and the Impact of Events Scale (Revised). This survey was distributed across four pediatric solid organ transplant centers in North America. Basic demographics, clinician characteristics, and information regarding wellness and self-care activities were collected. Descriptive and correlational analyses were performed. RESULTS: 135 participants completed the survey; 76% were female and 78% were Caucasian. One-third (34%) of participants endorsed burnout, while 43% reported professional fulfillment. Approximately 15% of respondents endorsed clinically significant levels of post-traumatic stress symptoms related to patient deaths, with female clinicians more likely to endorse symptoms (p=.01). Nearly 80% of participants reported engaging in self-care activities outside of work and only 10% of participants reported participation in hospital-sponsored wellness programs. CONCLUSIONS: Pediatric solid-organ transplant team members exhibited moderate levels of burnout, professional fulfillment, and post-traumatic stress. Female clinicians were the most likely to experience both work exhaustion and post-traumatic stress symptoms. Transplant centers are encouraged to consider interventions and programming to improve clinician wellness.

BACKGROUND: Ventricular assist device (VAD) therapy has provided pediatric patients with severe heart failure new therapeutic options. However, pediatric patients and families receiving VAD therapy also experience psychosocial challenges. No synthesis of the literature on psychosocial outcomes within the pediatric VAD population has been conducted; thus, the current review sought to systematically investigate the impact of pediatric VAD on patient, parent, and family psychosocial outcomes and assess variables associated with poorer outcomes. METHODS: Literature searches were conducted in PsycInfo, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases and full texts were assessed according to pre-established inclusion criteria. Main findings and study quality were reviewed. RESULTS: Sixteen studies were included in the present review. Findings highlighted the likelihood for psychological sequelae among pediatric patients and families receiving VAD therapy, including decreased psychological and emotional well-being, elevated stress, and difficulty coping with changes to family dynamics and responsibilities. Health-related quality of life was reported comparable to that of healthy peers and children with other cardiac conditions. CONCLUSIONS: Patients and families on VAD therapy experience significant difficulties in psychological well-being and challenges related to adjustment. The current review underscores the importance of ongoing support for families and continued assessment of psychosocial functioning across VAD support. Three critical periods for increased distress were identified: 1) immediately following VAD implantation, 2) discharge home and the weeks following discharge, and 3) long-term VAD therapy.

BACKGROUND: The prognostic value of peak cardiac troponin (cTn) in different types of acute myocardial infarction (AMI) under the universal clinical classification is unknown. HYPOTHESIS: We tested the hypothesis that the prognostic value of cTn varies with its peak level and type of AMI. METHODS: We studied 345 consecutive patients with AMI with mean follow‐up of 30.6 months according to quartiles of peak cTn level (QPTL) and the type of AMI. The study outcomes were the major adverse cardiovascular events (MACE; composite of all causes of mortality and recurrent AMI) and the individual components of MACE. RESULTS: The study included patients with AMI Type 1 (n = 276), type 2 (n = 54), ST‐segment elevation myocardial infarction (STEMI; n = 159), and non‐ST‐segment elevation myocardial infarction (NSTEMI; n = 186). Overall, peak cTn level was an independent predictor of MACE (hazard ratio [HR]: 1.001, 95% confidence interval [CI]: 1.000–1.003, P = 0.01) and death (HR: 1.002, 95% CI: 1.001–1.004, P = 0.003), but not of recurrent AMI. The highest risk of MACE and death was in the highest QPTL (61.6%, P = .016 and 66.3%, P = 0.021, respectively) while the highest risk of recurrent AMI was in the lowest QPTL (83.7%, P = 0.04). Quartiles of peak cTn level were significantly associated with increased risk of MACE and death in patients with Type 1 (all P = 0.01) and STEMI (P = 0.01 and P = 0.02, respectively), but no association existed in type 2 or NSTEMI patients. CONCLUSIONS: Overall, peak cTn predicts the risk of MACE and death but not the risk of AMI. While in Type 1 and STEMI patients, QPTL are associated with risk of MACE and death, no association exists in type 2 or NSTEMI patients. Copyright © 2009 Wiley Periodicals, Inc.

Introduction: The universal classification (UC) of AMI aims to facilitate cross-study analysis, yet the long-term outcomes using UC are largely unknown. Hypothesis: We tested the hypothesis that the long-term outcome of patients with AMI is better predicted by UC than ST segment classification. Methods: We conducted a prospective study of 348 consecutive patients with AMI with mean follow-up of 30.6 months. The primary outcome was the major adverse cardiovascular events (MACE) [composite of all causes of mortality, recurrent AMI, and stroke]. Multivariate and survival analysis of MACE was performed. Results: The study population was STEMI=168, NSTEMI=180, Type 1=278, Type 2=55, Type 3=5, Type 4a=2, Type 4b=5, and Type 5=3. During follow-up 80 patients died, 31 had an AMI, and 7 had a stroke. UC correlates with the ST segment classification (p Conclusions: UC of AMI is a better long-term predictor of MACE. The quartile of peak Troponin levels, cardiovascular risk factors, and number of vascular beds affected are independent predictors of MACE, while cardiac medications protect against MACE, except in Type 2 patients.