Rossano JW, Kim JJ, Decker JA et al (2012) Prevalence, morbidity, and mortality of heart failure-related hospitalizations in children in the United States: a population-based study. J Card Fail. https://doi.org/10.1016/j.cardfail.2012.03.001
Cunningham RM, Walton MA, Carter PM (2018) The major causes of death in children and adolescents in the United States. N Engl J Med. https://doi.org/10.1056/nejmsr1804754
Almond CSD, Thiagarajan RR, Piercey GE et al (2009) Waiting list mortality among children listed for heart transplantation in the United States. Circulation. https://doi.org/10.1161/CIRCULATIONAHA.108.815712
Article PubMed PubMed Central Google Scholar
Cabrera AG, Khan MS, Morales DLS et al (2013) Infectious complications and outcomes in children supported with left ventricular assist devices. J Hear Lung Transpl. https://doi.org/10.1016/j.healun.2013.02.002
Molloy MA, DeWitt ES, Morell E et al (2021) Parent-reported symptoms and perceived effectiveness of treatment in children hospitalized with advanced heart disease. J Pediatr 238:221-227.e1. https://doi.org/10.1016/j.jpeds.2021.06.077
Blume ED, Balkin EM, Aiyagari R et al (2014) Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study. Pediatr Crit Care Med. https://doi.org/10.1097/PCC.0000000000000072
Mcmurray JJV, Adamopoulos S, Anker SD et al (2012) ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure 2012. Eur J Heart Fail. https://doi.org/10.1093/eurjhf/hfs105
Article PubMed PubMed Central Google Scholar
Yancy CW, Jessup M, Bozkurt B et al (2013) ACCF/AHA guideline for the management of heart failure. J Am Coll Cardiol. https://doi.org/10.1016/j.jacc.2013.05.019
Article PubMed PubMed Central Google Scholar
Heart Failure Society of America. HFSA (2010) Comprehensive heart failure practice guideline. J Card Fail. https://doi.org/10.1016/j.cardfail.2010.04.004
Cousino MK, Lord BT, Blume ED (2021) State of the science and future research directions in palliative and end-of-life care in pediatric cardiology: a report from the Harvard Radcliffe Accelerator Workshop. Under Rev Cardiol Young 32(3):431–436
Blume ED, Kirsch R, Cousino MK et al (2023) Palliative care across the life span for children with heart disease: a scientific statement from the American Heart Association. Circ Cardiovasc Qual Outcomes 16:e000114. https://doi.org/10.1161/HCQ.0000000000000114
Article PubMed PubMed Central Google Scholar
Auriemma CL, Taylor SP, Harhay MO, Courtright KR, Halpern SD (2021) Hospital-free days: a pragmatic and patient-centered outcome for trials among critically and seriously Ill patients. Am J Respir Crit Care Med 204(8):902–909. https://doi.org/10.1164/rccm.202104-1063PP
Article PubMed PubMed Central Google Scholar
Ariti CA, Cleland JGF, Pocock SJ et al (2011) Days alive and out of hospital and the patient journey in patients with heart failure: insights from the Candesartan in Heart failure: Assessment of Reduction in Mortality and morbidity (CHARM) program. Am Heart J. https://doi.org/10.1016/j.ahj.2011.08.003
Lopes RD, Macedo AVS, Silva PGMdeBE et al (2021) Effect of discontinuing vs continuing angiotensin-converting enzyme inhibitors and angiotensin II receptor blockers on days alive and out of the hospital in patients admitted with COVID-19: a randomized clinical trial. JAMA 325(3):254–264. https://doi.org/10.1001/JAMA.2020.25864
Article CAS PubMed PubMed Central Google Scholar
Fanaroff AC, Cyr D, Neely ML et al (2018) Days alive and out of hospital: exploring a patient-centered, pragmatic outcome in a clinical trial of patients with acute coronary syndromes. Circ Cardiovasc Qual Outcomes 11(12):e004755. https://doi.org/10.1161/CIRCOUTCOMES.118.004755
Article PubMed PubMed Central Google Scholar
Stevenson LW (2005) Evaluation study of congestive heart failure and pulmonary artery catheterization effectiveness: the ESCAPE trial. JAMA 294(13):1625–1633. https://doi.org/10.1001/JAMA.294.13.1625
Gans D, Hadler MW, Chen X et al (2016) Cost analysis and policy implications of a pediatric palliative care program. J Pain Symptom Manage 52(3):329–335. https://doi.org/10.1016/J.JPAINSYMMAN.2016.02.020
Morell E, Wolfe J, Scheurer M et al (2012) Patterns of care at end of life in children with advanced heart disease. Arch Pediatr Adolesc Med 166(8):745–748. https://doi.org/10.1001/archpediatrics.2011.1829
Article PubMed PubMed Central Google Scholar
Miller JR, Boston US, Epstein DJ et al (2015) Pediatric quality of life while supported with a ventricular assist device. Congenit Heart Dis 10(4):E189–E196. https://doi.org/10.1111/CHD.12260
Article PubMed PubMed Central Google Scholar
Bluebond-Langner M, Beecham E, Candy B, Langner R, Jones L (2013) Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy. Palliat Med 27(8):705. https://doi.org/10.1177/0269216313483186
Article PubMed PubMed Central Google Scholar
Moynihan KM, Heith CS, Snaman JM et al (2021) Palliative care referrals in cardiac disease. Pediatrics. https://doi.org/10.1542/PEDS.2020-018580
Knoll C, Kaufman B, Chen S et al (2020) Palliative care engagement for pediatric ventricular assist device patients: a single-center experience. ASAIO J. https://doi.org/10.1097/MAT.0000000000001092
Halpern SD, Small DS, Troxel AB et al (2020) Effect of default options in advance directives on hospital-free days and care choices among seriously ill patients: a randomized clinical Trial. JAMA Netw Open 3(3):e201742. https://doi.org/10.1001/JAMANETWORKOPEN.2020.1742
Article PubMed PubMed Central Google Scholar
Shinall MC, Karlekar M, Martin S et al (2019) COMPASS: a pilot trial of an early palliative care intervention for patients with end stage liver disease. J Pain Symptom Manage 58(4):614. https://doi.org/10.1016/J.JPAINSYMMAN.2019.06.023
Article PubMed PubMed Central Google Scholar
Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J (2015) Improved quality of life at end of life related to home-based palliative care in children with cancer. J Palliat Med 18(2):143–150. https://doi.org/10.1089/JPM.2014.0285
Feudtner C, Womer J, Augustin R (2013) Pediatric palliative care programs in children’s hospitals: a cross-sectional national survey. Pediatrics 132:1063–1070
Balkin EM, Kirkpatrick JN, Kaufman B et al (2017) Pediatric cardiology provider attitudes about palliative care: a multicenter survey study. Pediatr Cardiol 38(7):1324–1331. https://doi.org/10.1007/s00246-017-1663-0
Feudtner C, DiGiuseppe DL, Neff JM (2003) Hospital care for children and young adults in the last year of life: a population-based study. BMC Med. https://doi.org/10.1186/1741-7015-1-3
Article PubMed PubMed Central Google Scholar
Castellanos DA, Ocampo EC, Gooden A et al (2019) Outcomes associated with unplanned interstage cardiac interventions after norwood palliation. Ann Thorac Surg 108:1423–1429. https://doi.org/10.1016/j.athoracsur.2019.06.041
Gans D, Hadler MW, Chen X et al (2015) Impact of a pediatric palliative care program on the caregiver experience. J Hosp Palliat Nurs 17(6):559–565. https://doi.org/10.1097/NJH.0000000000000203
Williams RJ, Lu M, Sleeper LA et al (2022) Pediatric heart transplant waiting times in the United States since the 2016 allocation policy change. Am J Transpl 22(3):833–842. https://doi.org/10.1111/AJT.16921
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