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Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion

AIMS: Pulmonary arterial hypertension (PAH) is common amongst patients with congenital heart disease (CHD). It is a severe and complex condition that adversely affects quality of life and prognosis. While quality of life questionnaires are routinely used in clinical pulmonary hypertension practice,...

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Autores principales: Constantine, Andrew, Condliffe, Robin, Clift, Paul, Tulloh, Robert, Dimopoulos, Konstantinos
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8120400/
https://www.ncbi.nlm.nih.gov/pubmed/33660435
http://dx.doi.org/10.1002/ehf2.13263
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author Constantine, Andrew
Condliffe, Robin
Clift, Paul
Tulloh, Robert
Dimopoulos, Konstantinos
author_facet Constantine, Andrew
Condliffe, Robin
Clift, Paul
Tulloh, Robert
Dimopoulos, Konstantinos
author_sort Constantine, Andrew
collection PubMed
description AIMS: Pulmonary arterial hypertension (PAH) is common amongst patients with congenital heart disease (CHD). It is a severe and complex condition that adversely affects quality of life and prognosis. While quality of life questionnaires are routinely used in clinical pulmonary hypertension practice, little is known on how to interpret their results and manage PAH‐CHD patients with evidence of impaired health‐related quality of life, especially those with advanced disease and palliative care needs. METHODS AND RESULTS: We performed a systematic review of studies concerning palliative care for people with PAH‐CHD, also reviewing the health‐related quality of life literature pertaining to these patients. Of 330 papers identified through initial screening, 17 were selected for inclusion. Underutilization of advance care planning and palliative care resources was common. Where palliative care input was sought, this was frequently late in the course of the disease. No studies provided evidence‐based clinical criteria for triggering referral to palliative care, a framework for providing tailored care in this patient group, or how to manage the risk of sudden cardiac death and implantable cardioverter defibrillators in advanced PAH‐CHD. We synthesize this information into eight important areas, including the impact of PAH‐CHD on quality of life, barriers to and benefits of palliative care involvement, advance care planning discussions, and end‐of‐life care issues in this complex patient group, and provide expert consensus on best practice in this field. CONCLUSIONS: This paper presents the results of a systematic review and expert statements on the preferred palliative care strategy for patients with PAH‐CHD.
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spelling pubmed-81204002021-05-21 Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion Constantine, Andrew Condliffe, Robin Clift, Paul Tulloh, Robert Dimopoulos, Konstantinos ESC Heart Fail Original Research Articles AIMS: Pulmonary arterial hypertension (PAH) is common amongst patients with congenital heart disease (CHD). It is a severe and complex condition that adversely affects quality of life and prognosis. While quality of life questionnaires are routinely used in clinical pulmonary hypertension practice, little is known on how to interpret their results and manage PAH‐CHD patients with evidence of impaired health‐related quality of life, especially those with advanced disease and palliative care needs. METHODS AND RESULTS: We performed a systematic review of studies concerning palliative care for people with PAH‐CHD, also reviewing the health‐related quality of life literature pertaining to these patients. Of 330 papers identified through initial screening, 17 were selected for inclusion. Underutilization of advance care planning and palliative care resources was common. Where palliative care input was sought, this was frequently late in the course of the disease. No studies provided evidence‐based clinical criteria for triggering referral to palliative care, a framework for providing tailored care in this patient group, or how to manage the risk of sudden cardiac death and implantable cardioverter defibrillators in advanced PAH‐CHD. We synthesize this information into eight important areas, including the impact of PAH‐CHD on quality of life, barriers to and benefits of palliative care involvement, advance care planning discussions, and end‐of‐life care issues in this complex patient group, and provide expert consensus on best practice in this field. CONCLUSIONS: This paper presents the results of a systematic review and expert statements on the preferred palliative care strategy for patients with PAH‐CHD. John Wiley and Sons Inc. 2021-03-03 /pmc/articles/PMC8120400/ /pubmed/33660435 http://dx.doi.org/10.1002/ehf2.13263 Text en © 2021 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of European Society of Cardiology. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Original Research Articles
Constantine, Andrew
Condliffe, Robin
Clift, Paul
Tulloh, Robert
Dimopoulos, Konstantinos
Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion
title Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion
title_full Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion
title_fullStr Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion
title_full_unstemmed Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion
title_short Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion
title_sort palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion
topic Original Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8120400/
https://www.ncbi.nlm.nih.gov/pubmed/33660435
http://dx.doi.org/10.1002/ehf2.13263
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