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Provider perspective on the role of palliative care in hypoplastic left heart syndrome

Published online by Cambridge University Press:  09 March 2020

Sarah Lowenstein ,
Robert Macauley ,
Kathleen Perko  and
Christina Ronai Open the ORCID record for Christina Ronai [Opens in a new window]
Sarah Lowenstein
Affiliation:
School of Medicine, Oregon Health & Science University, Portland, OR, USA
Robert Macauley
Affiliation:
School of Medicine, Oregon Health & Science University, Portland, OR, USA Bridges Palliative Care Program, Doernbecher Children’s Hospital, Portland, OR, USA
Kathleen Perko
Affiliation:
Bridges Palliative Care Program, Doernbecher Children’s Hospital, Portland, OR, USA
Christina Ronai*
Affiliation:
School of Medicine, Oregon Health & Science University, Portland, OR, USA Pediatric Cardiology, Doernbecher Children’s Hospital, Portland, OR, USA
*
Author for correspondence: C. Ronai, MD, MSEd, Department of Pediatrics, Division of Cardiology, Doernbecher Children’s Hospital, 707 SW Gaines St., CDRC-P, Portland, OR, 97239, USA. Tel: +1 503 494 9899; Fax: +503-418-5793. E-mail: ronai@ohsu.edu
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Abstract

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.

Keywords

Hypoplastic left heart syndromesingle ventricle defectpalliative caregoals of careprenatal diagnosis
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 3 , March 2020 , pp. 377 - 382
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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