ArticleJournal of the American Heart Association2021
Parent and Physician Understanding of Prognosis in Hospitalized Children With Advanced Heart Disease.
Article in Journal of the American Heart Association, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers.
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Who cites it
21 citing papers in PubMed, 38 citations in OpenAlex.
- Shifting sands: How parents engage with the idea of their child's death.Palliative & supportive care · 2026Article
- Update on Education for Families and Patients With Pediatric Heart Disease: A Focus on Technological Advancements, Procedures, and Transitions of Care: A Scientific Statement From the American Heart Association.Journal of the American Heart Association · 2026Review
- Perceived severity and parental distress after positive expanded newborn screening: parent-clinician concordance and dyadic processes.European journal of pediatrics · 2026Article
- Integrating between cultural competence and humility: a qualitative study of Israeli pediatric cardiologists.International journal for equity in health · 2026Article
- Palliative Care Education in Pediatric Cardiology Fellowships: A Survey of Program Directors.Pediatric cardiology · 2026Article
- Associations of Physician Perspectives, Personal Choices, and Counseling for Severe Congenital Heart Defects.Prenatal diagnosis · 2025Article
- Palliative care for the cardiothoracic transplant recipient.JHLT open · 2025Article
- A Pediatric Interprofessional Cardiac Intensive Care Unit Intervention: CICU Teams and Loved Ones Communicating (CICU TALC) is Feasible, Acceptable, and Improves Clinician Communication Behaviors in Family Meetings.Pediatric cardiology · 2025Article
- Teaching pediatric cardiology fellows to communicate serious news: a pilot study.BMC medical education · 2024Article
- Parent and healthcare professional experiences of critical congenital heart disease in New Zealand to advance health equity.BMC health services research · 2024Article
- Clinician Perceptions of Family-Centered Care in Pediatric and Congenital Heart Settings.JAMA network open · 2024Article
- Days alive and out of hospital for children born with single-ventricle heart disease.Cardiology in the young · 2024Article
- Parent communication with care teams and preparation for family meetings in the paediatric cardiac ICU: a qualitative study.Cardiology in the young · 2024Article
- Medical and End-of-Life Decision-Making Preferences in Adolescents and Young Adults with Advanced Heart Disease and Their Parents.JAMA network open · 2023Article
- Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease.Journal of pediatric intensive care · 2023Article
- Palliative Care Across the Life Span for Children With Heart Disease: A Scientific Statement From the American Heart Association.Circulation. Cardiovascular quality and outcomes · 2023Review
- Parent-Provider Communication in Hospitalized Children with Advanced Heart Disease.Pediatric cardiology · 2022Article
- Intervention Codesign in the Pediatric Cardiac Intensive Care Unit to Improve Family Meetings.Journal of pain and symptom management · 2022Article
- Comparison of Postoperative, In-Hospital Outcomes After Complete Repair of Tetralogy of Fallot Between 22q11.2 Deletion Syndrome and Trisomy 21.Pediatric cardiology · 2022Article
- Palliative Care in Children With Advanced Heart Disease in a Tertiary Care Environment: A Mini Review.Frontiers in cardiovascular medicine · 2022Review
Corrections and comments
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Authors and funding
9 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background The unpredictable trajectory of pediatric advanced heart disease makes prognostication difficult for physicians and informed decision-making challenging for families. This study evaluated parent and physician understanding of disease burden and prognosis in hospitalized children with advanced heart disease. Methods and Results A longitudinal survey study of parents and physicians caring for patients with advanced heart disease age 30 days to 19 years admitted for ≥7 days was performed over a 1-year period (n=160 pairs). Percentage agreement and weighted kappa statistics were used to assess agreement. Median patient age was 1 year (interquartile range, 1-5), 39% had single-ventricle lesions, and 37% were in the cardiac intensive care unit. Although 92% of parents reported understanding their child's prognosis "extremely well" or "well," 28% of physicians thought parents understood the prognosis only "a little," "somewhat," or "not at all." Better parent-reported prognostic understanding was associated with greater preparedness for their child's medical problems (odds ratio, 4.7; 95% CI, 1.4-21.7,
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.