Risk factors and outcomes of sudden cardiac arrest in pediatric heart transplant recipients

Hollander, Seth A.; Barkoff, L.; Giacone, Heather; Adamson, Gregory T.; Kaufman, Beth D.; Motonaga, Kara S.; Dubin, Anne M.; Chubb, Henry

doi:10.1016/j.ahj.2022.06.003

Cited by 2 publications

(2 citation statements)

References 17 publications

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“…advanced heart disease, only 16% received a subspeciality palliative care consultation. Although three-quarters of the medical records of patients in this study indicated an end-of-life discussion was had with parents, 23 other studies have highlighted the risk of sudden, unexpected death in some advanced heart disease populations, 24,25 leaving little time for such discussions with patients themselves. Palliative care-focused discussions, whether by cardiac team or subspeciality palliative care team, are likely to result in communication and decision-making approaches best aligned with patient preferences.…”

Section: Aya Participants Parentsmentioning

confidence: 71%

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

et al. 2023

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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.

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Section: Aya Participants Parentsmentioning

confidence: 71%

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

et al. 2023

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“…The vast majority of these arrests were fatal. 30 Longer term adverse outcomes after transplant have also been found to be associated with race. Carlo et al demonstrated that Black race ((HR 2.22, 95% CI 1.40-3.53) and high neighborhood socioeconomic deprivation index (HR 1.97, 95% CI 1.23-3.17) patients were more likely to experience graft loss.…”

Section: Diversity Equity and Inclusionmentioning

confidence: 99%

The Year in Review: Anesthesia for Congenital Heart Disease 2022

Goodmanson

Latham

Landsem

et al. 2023

Semin Cardiothorac Vasc Anesth

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This review focuses on the literature published during the calendar year 2022 that is of interest to anesthesiologists taking care of children and adults with congenital heart disease (CHD). Four major themes are discussed: enhanced recovery after surgery(ERAS); diversity, equity, and inclusion; the state of pediatric cardiac anesthesiology as a subspecialty in the United States; and neuromonitoring for pediatric cardiac surgery.

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Risk factors and outcomes of sudden cardiac arrest in pediatric heart transplant recipients

Cited by 2 publications

References 17 publications

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

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

The Year in Review: Anesthesia for Congenital Heart Disease 2022

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