For Publishers
DiscoveryMetadataPeer reviewHostingPublishing
For Researchers
JoinPublishReviewCollect
Register
Blog
About
Search
Advanced search
My ScienceOpen
Search
For Publishers
For Researchers
Blog
About
1
views
31
references
 Top references
cited by
4
    
0 reviews
 Review
0
comments
 Comment
0
recommends
+1 Recommend
0 collections
    0
    shares
      442
      similar
       All similar
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Pediatric Palliative Care in the Heart Failure, Ventricular Assist Device and Transplant Populations: Supporting Patients, Families and Their Clinical Teams

      review-article

      Read this article at

      ScienceOpenPublisherPMC
      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Heart failure is a life-changing diagnosis for a child and their family. Pediatric patients with heart failure experience significant morbidity and frequent hospitalizations, and many require advanced therapies such as mechanical circulatory support and/or heart transplantation. Pediatric palliative care is an integral resource for the care of patients with heart failure along its continuum. This includes support during the grief of a new diagnosis in a child critically ill with decompensated heart failure, discussion of goals of care and the complexities of mechanical circulatory support, the pensive wait for heart transplantation, and symptom management and psychosocial support throughout the journey. In this article, we discuss the scope of pediatric palliative care in the realm of pediatric heart failure, ventricular assist device (VAD) support, and heart transplantation. We review the limited, albeit growing, literature in this field, with an added focus on difficult conversation and decision support surrounding re-transplantation, HF in young adults with congenital heart disease, the possibility of destination therapy VAD, and the grimmest decision of VAD de-activation.

          Related collections

          Most cited references31

          • Record: found
          • Abstract: found
          • Article: not found

          Palliative Care in Heart Failure

          Dio Kavalieratos, Laura P Gelfman, Laura E. Tycon … (2017)
          Patients with heart failure (HF) and their families experience stress and suffering from a variety of sources over the course of the HF experience. Palliative care is an interdisciplinary service and an overall approach to care that improves quality of life and alleviates suffering for those living with serious illness, regardless of prognosis. In this review, we synthesize the evidence from randomized clinical trials of palliative care interventions in HF. While the evidence base for palliative care in HF is promising, it is still in its infancy and requires additional high-quality, methodologically sound studies to clearly elucidate the role of palliative care for patients and families living with the burdens of HF. Yet, an increase in attention to primary palliative care (e.g., basic physical and emotional symptom management, advance care planning), provided by primary care and cardiology clinicians, may be a vehicle to address unmet palliative needs earlier and throughout the illness course.
          Article 0 comments Cited 58 times – based on 0 reviews     Review now
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            Prevalence, morbidity, and mortality of heart failure-related hospitalizations in children in the United States: a population-based study.

            Joseph W Rossano, Jeffrey J Kim, Jamie Decker … (2012)
            Few data exist on prevalence, morbidity, and mortality of pediatric heart failure hospitalizations. We tested the hypotheses that pediatric heart failure-related hospitalizations increased over time but that mortality decreased. Factors associated with mortality and length of stay were also assessed.
            Article 0 comments Cited 56 times – based on 0 reviews     Review now
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              Waiting list mortality among children listed for heart transplantation in the United States.

              Onkar M P Singh, Christopher Almond, Ravi Thiagarajan … (2009)
              Children listed for heart transplantation face the highest waiting list mortality in solid-organ transplantation medicine. We examined waiting list mortality since the pediatric heart allocation system was revised in 1999 to determine whether the revised allocation system is prioritizing patients optimally and to identify specific high-risk populations that may benefit from emerging pediatric cardiac assist devices. We conducted a multicenter cohort study using the US Scientific Registry of Transplant Recipients. All children <18 years of age who were listed for a heart transplant between 1999 and 2006 were included. Among 3098 children, the median age was 2 years (interquartile range 0.3 to 12 years), and median weight was 12.3 kg (interquartile range 5 to 38 kg); 1294 (42%) were nonwhite; and 1874 (60%) were listed as status 1A (of whom 30% were ventilated and 18% were on extracorporeal membrane oxygenation). Overall, 533 (17%) died, 1943 (63%) received transplants, and 252 (8%) recovered; 370 (12%) remained listed. Multivariate predictors of waiting list mortality include extracorporeal membrane oxygenation support (hazard ratio [HR] 3.1, 95% confidence interval [CI] 2.4 to 3.9), ventilator support (HR 1.9, 95% CI 1.6 to 2.4), listing status 1A (HR 2.2, 95% CI 1.7 to 2.7), congenital heart disease (HR 2.2, 95% CI 1.8 to 2.6), dialysis support (HR 1.9, 95% CI 1.2 to 3.0), and nonwhite race/ethnicity (HR 1.7, 95% CI 1.4 to 2.0). US waiting list mortality for pediatric heart transplantation remains unacceptably high in the current era. Specific high-risk subgroups can be identified that may benefit from emerging pediatric cardiac assist technologies. The current pediatric heart-allocation system captures medical urgency poorly. Further research is needed to define the optimal organ-allocation system for pediatric heart transplantation.
              Article 0 comments Cited 46 times – based on 0 reviews     Review now
                Bookmark
                All references

                Author and article information

                Contributors
                Regina Okhuysen-Cawley: Role: Academic Editor
                Journal
                Journal ID (nlm-ta): Children (Basel)
                Journal ID (iso-abbrev): Children (Basel)
                Journal ID (publisher-id): children
                Title: Children
                Publisher: MDPI
                ISSN (Electronic): 2227-9067
                Publication date (Electronic): 02 June 2021
                Publication date Collection: June 2021
                Volume: 8
                Issue: 6
                Electronic Location Identifier: 468
                Affiliations
                [1 ]Lillie Frank Abercrombie Section of Cardiology, Department of Pediatrics, Baylor College of Medicine, Texas Children’s Hospital, Houston, TX 77030, USA; kyle.hope@ 123456bcm.edu (K.D.H.); priya.bhat@ 123456bcm.edu (P.N.B.); wjdreyer@ 123456texaschildrens.org (W.J.D.); afonso@ 123456bcm.edu (N.S.A.); Rachel.Ninemire@ 123456bcm.edu (M.R.N.); Barbara-Jo.Achuff@ 123456bcm.edu (B.-J.A.); erin.kritz@ 123456bcm.edu (E.M.K.)
                [2 ]Section of Pediatric Critical Care Medicine, Department of Pediatrics, Baylor College of Medicine, Texas Children’s Hospital, Houston, TX 77030, USA; jaime.jump@ 123456bcm.edu
                [3 ]Michael E. DeBakey Department of Surgery and Pediatrics, Baylor College of Medicine, Texas Children’s Hospital, Houston, TX 77030, USA; baelias@ 123456texaschildrens.org
                [4 ]Section of Pediatric Palliative Care, Department of Pediatrics, Baylor College of Medicine, Texas Children’s Hospital, Houston, TX 77030, USA; gina.santucci@ 123456bcm.edu
                [5 ]Section of Neonatology, Department of Pediatrics, Baylor College of Medicine, Texas Children’s Hospital, Houston, TX 77030, USA; sharada.gowda@ 123456bcm.edu
                Author notes
                [* ]Correspondence: kriti.puri@ 123456bcm.edu ; Tel.: +1-281-508-3153
                Author information
                https://orcid.org/0000-0001-7009-4821
                Article
                Publisher ID: children-08-00468
                DOI: 10.3390/children8060468
                PMC ID: 8228348
                SO-VID: 338df0dc-940c-4bb3-b389-507530f8d3b8
                Copyright © © 2021 by the authors.
                License:

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( https://creativecommons.org/licenses/by/4.0/).

                History
                Date received : 21 March 2021
                Date accepted : 18 May 2021
                Categories
                Subject: Review

                Keywords: palliative care,heart failure,ventricular assist device,heart transplant
                Data availability:
                Keywords: palliative care, heart failure, ventricular assist device, heart transplant

                Comments

                Comment on this article

                scite_

                Similar content442

                See all similar

                Cited by4

                See all cited by

                Most referenced authors445

                See all reference authors