Palliative care in pulmonary hypertension associated with congenital heart disease: systematic review and expert opinion.
Advance care planning
Congenital heart defects
End-of-life care
Palliative care
Pulmonary hypertension
Systematic review
Journal
ESC heart failure
ISSN: 2055-5822
Titre abrégé: ESC Heart Fail
Pays: England
ID NLM: 101669191
Informations de publication
Date de publication:
06 2021
06 2021
Historique:
revised:
13
01
2021
received:
12
10
2020
accepted:
29
01
2021
pubmed:
5
3
2021
medline:
3
7
2021
entrez:
4
3
2021
Statut:
ppublish
Résumé
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. 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. This paper presents the results of a systematic review and expert statements on the preferred palliative care strategy for patients with PAH-CHD.
Identifiants
pubmed: 33660435
doi: 10.1002/ehf2.13263
pmc: PMC8120400
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Systematic Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
1901-1914Informations de copyright
© 2021 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of European Society of Cardiology.
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