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Provider perspective on the role of palliative care in hypoplastic left heart syndrome
- Sarah Lowenstein, Robert Macauley, Kathleen Perko, Christina Ronai
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- Journal:
- Cardiology in the Young / Volume 30 / Issue 3 / March 2020
- Published online by Cambridge University Press:
- 09 March 2020, pp. 377-382
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- Article
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Objective:
Hypoplastic left heart syndrome is a single ventricle defect. While staged surgical palliative treatments have revolutionised care, patients with hypoplastic left heart syndrome continue to have significant morbidity and mortality. In 2017, the National Pediatric Cardiology Quality Improvement Collaborative recommended all single ventricle patients to receive a prenatal palliative care consult. This study aimed to elucidate provider perspectives on the implementation of prenatal palliative care consults for families expecting a child with hypoplastic left heart syndrome.
Methods:An online survey was administered to obstetric and paediatric providers of relevant disciplines to assess their experience with palliative care involvement in hypoplastic left heart syndrome cases.
Results:Nearly, all physicians (97%) and most registered nurses (79%) agreed that the initial palliative care consult for patients with hypoplastic left heart syndrome should occur during the prenatal period. Respondents also indicated that prenatal palliative care consults should also be offered in a variety of other CHD conditions. Participants believed positive aspects of this new referral protocol included an expanded support network for families, decreased family stress during the postnatal period, increased patient education about what to expect during the postnatal period, and continuity of care.
Conclusion:Multidisciplinary healthcare professionals believe that prenatal palliative care consults provide a variety of benefits for patients and families with hypoplastic left heart syndrome. Additional, multi-centre research is necessary to evaluate whether prenatal palliative care consults should become standard of care for families expecting a child with a single ventricle defect.
Contributors
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- By Isabella Aboderin, W. Andrew Achenbaum, Katherine R. Allen, Toni C. Antonucci, Sara Arber, Claudine Attias‐Donfut, Paul B. Baltes, Sandhi Maria Barreto, Vern L. Bengtson, Simon Biggs, Joanna Bornat, Julie B. Boron, Mike Boulton, Clive E. Bowman, Marjolein Broese van Groenou, Edna Brown, Robert N. Butler, Bill Bytheway, Neena L. Chappell, Neil Charness, Kaare Christensen, Peter G. Coleman, Ingrid Arnet Connidis, Neal E. Cutler, Sara J. Czaja, Svein Olav Daatland, Lia Susana Daichman, Adam Davey, Bleddyn Davies, Freya Dittmann‐Kohli, Glen H. Elder, Carroll L. Estes, Mike Featherstone, Amy Fiske, Alexandra Freund, Daphna Gans, Linda K. George, Roseann Giarrusso, Chris Gilleard, Jay Ginn, Edlira Gjonça, Elena L. Grigorenko, Jaber F. Gubrium, Sarah Harper, Jutta Heckhausen, Akiko Hashimoto, Jon Hendricks, Mike Hepworth, Charlotte Ikels, James S. Jackson, Yuri Jang, Bernard Jeune, Malcolm L. Johnson, Randi S. Jones, Alexandre Kalache, Robert L. Kane, Rosalie A. Kane, Ingrid Keller, Rose Anne Kenny, Thomas B. L. Kirkwood, Kees Knipscheer, Martin Kohli, Gisela Labouvie‐Vief, Kristina Larsson, Shu‐Chen Li, Charles F. Longino, Ariela Lowenstein, Erick McCarthy, Gerald E. McClearn, Brendan McCormack, Elizabeth MacKinlay, Alfons Marcoen, Michael Marmot, Tom Margrain, Victor W. Marshall, Elizabeth A. Maylor, Ruud ter Meulen, Harry R. Moody, Robert A. Neimeyer, Demi Patsios, Margaret J. Penning, Stephen A. Petrill, Chris Phillipson, Leonard W. Poon, Norella M. Putney, Jill Quadagno, Pat Rabbitt, Jennifer Reid Keene, Sandra G. Reynolds, Steven R. Sabat, Clive Seale, Merril Silverstein, Hannes B. Staehelin, Ursula M. Staudinger, Robert J. Sternberg, Debra Street, Philip Taylor, Fleur Thomése, Mats Thorslund, Jinzhou Tian, Theo van Tilburg, Fernando M. Torres‐Gil, Josy Ubachs‐Moust, Christina Victor, K. Warner Shaie, Anthony M. Warnes, James L. Werth, Sherry L. Willis, François‐Charles Wolff, Bob Woods
- Edited by Malcolm L. Johnson, University of Bristol
- Edited in association with Vern L. Bengtson, University of Southern California, Peter G. Coleman, University of Southampton, Thomas B. L. Kirkwood, University of Newcastle upon Tyne
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- Book:
- The Cambridge Handbook of Age and Ageing
- Published online:
- 05 June 2016
- Print publication:
- 01 December 2005, pp xii-xvi
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- Chapter
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