Defining heart failure in adult congenital heart disease

Joel McLarry, Craig Broberg, Alexander R. Opotowsky, Tina Kaufman, Karen Stout, Luke Burchill

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

As the adult congenital heart disease (ACHD) population expands and ages, the incidence and prevalence of heart failure will rise. This poses several challenges, all complicated by our nascent understanding of heart failure epidemiology, pathophysiology and management in adults with congenital heart disease. Current definitions extrapolated from acquired heart failure often disregard the unique pathophysiology of heart failure in adults with congenital heart disease. Others have suggested that congenital heart disease is the 'original heart failure syndrome' implying that all ACHD patients are destined to manifest heart failure. Neither the adoption of acquired heart failure definitions nor the belief that heart failure is the common ultimate manifestation of ACHD has advanced the care of ACHD patients. The absence of a comprehensive definition that focuses on common themes while recognizing the unique manifestations of heart failure in ACHD stifles research progress and has translated to a paucity of ACHD specific recommendations in existing heart failure guidelines. Since many ACHD heart failure patients do not meet standard definitions of heart failure their access to potentially beneficial interventions such as cardiac rehabilitation is restricted by payers and regulators taking a narrow view of acquired heart failure guidelines. ACHD heart failure definitions that can be applied in the clinical and research setting are needed to guide treatment, facilitate communication between specialists, determine the prevalence and incidence of heart failure in AHCD, and improve ACHD patients' access to heart failure treatments. The purpose of this review is to understand how heart failure has been considered and defined in the existing ACHD literature and to highlight the need for a definition of heart failure applicable to ACHD.

Original languageEnglish (US)
Pages (from-to)3-7
Number of pages5
JournalProgress in Pediatric Cardiology
Volume38
Issue number1-2
DOIs
StatePublished - 2014

Fingerprint

Heart Diseases
Heart Failure
Guidelines
Stifle
Incidence
Research
Epidemiology

Keywords

  • Adult congenital heart disease
  • Fontan
  • Heart failure
  • Ventricular dysfunction

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine
  • Pediatrics, Perinatology, and Child Health

Cite this

Defining heart failure in adult congenital heart disease. / McLarry, Joel; Broberg, Craig; Opotowsky, Alexander R.; Kaufman, Tina; Stout, Karen; Burchill, Luke.

In: Progress in Pediatric Cardiology, Vol. 38, No. 1-2, 2014, p. 3-7.

Research output: Contribution to journalArticle

McLarry, Joel ; Broberg, Craig ; Opotowsky, Alexander R. ; Kaufman, Tina ; Stout, Karen ; Burchill, Luke. / Defining heart failure in adult congenital heart disease. In: Progress in Pediatric Cardiology. 2014 ; Vol. 38, No. 1-2. pp. 3-7.
@article{5ad8425af80e4572888a7a9b41098549,
title = "Defining heart failure in adult congenital heart disease",
abstract = "As the adult congenital heart disease (ACHD) population expands and ages, the incidence and prevalence of heart failure will rise. This poses several challenges, all complicated by our nascent understanding of heart failure epidemiology, pathophysiology and management in adults with congenital heart disease. Current definitions extrapolated from acquired heart failure often disregard the unique pathophysiology of heart failure in adults with congenital heart disease. Others have suggested that congenital heart disease is the 'original heart failure syndrome' implying that all ACHD patients are destined to manifest heart failure. Neither the adoption of acquired heart failure definitions nor the belief that heart failure is the common ultimate manifestation of ACHD has advanced the care of ACHD patients. The absence of a comprehensive definition that focuses on common themes while recognizing the unique manifestations of heart failure in ACHD stifles research progress and has translated to a paucity of ACHD specific recommendations in existing heart failure guidelines. Since many ACHD heart failure patients do not meet standard definitions of heart failure their access to potentially beneficial interventions such as cardiac rehabilitation is restricted by payers and regulators taking a narrow view of acquired heart failure guidelines. ACHD heart failure definitions that can be applied in the clinical and research setting are needed to guide treatment, facilitate communication between specialists, determine the prevalence and incidence of heart failure in AHCD, and improve ACHD patients' access to heart failure treatments. The purpose of this review is to understand how heart failure has been considered and defined in the existing ACHD literature and to highlight the need for a definition of heart failure applicable to ACHD.",
keywords = "Adult congenital heart disease, Fontan, Heart failure, Ventricular dysfunction",
author = "Joel McLarry and Craig Broberg and Opotowsky, {Alexander R.} and Tina Kaufman and Karen Stout and Luke Burchill",
year = "2014",
doi = "10.1016/j.ppedcard.2014.12.002",
language = "English (US)",
volume = "38",
pages = "3--7",
journal = "Progress in Pediatric Cardiology",
issn = "1058-9813",
publisher = "Elsevier Ireland Ltd",
number = "1-2",

}

TY - JOUR

T1 - Defining heart failure in adult congenital heart disease

AU - McLarry, Joel

AU - Broberg, Craig

AU - Opotowsky, Alexander R.

AU - Kaufman, Tina

AU - Stout, Karen

AU - Burchill, Luke

PY - 2014

Y1 - 2014

N2 - As the adult congenital heart disease (ACHD) population expands and ages, the incidence and prevalence of heart failure will rise. This poses several challenges, all complicated by our nascent understanding of heart failure epidemiology, pathophysiology and management in adults with congenital heart disease. Current definitions extrapolated from acquired heart failure often disregard the unique pathophysiology of heart failure in adults with congenital heart disease. Others have suggested that congenital heart disease is the 'original heart failure syndrome' implying that all ACHD patients are destined to manifest heart failure. Neither the adoption of acquired heart failure definitions nor the belief that heart failure is the common ultimate manifestation of ACHD has advanced the care of ACHD patients. The absence of a comprehensive definition that focuses on common themes while recognizing the unique manifestations of heart failure in ACHD stifles research progress and has translated to a paucity of ACHD specific recommendations in existing heart failure guidelines. Since many ACHD heart failure patients do not meet standard definitions of heart failure their access to potentially beneficial interventions such as cardiac rehabilitation is restricted by payers and regulators taking a narrow view of acquired heart failure guidelines. ACHD heart failure definitions that can be applied in the clinical and research setting are needed to guide treatment, facilitate communication between specialists, determine the prevalence and incidence of heart failure in AHCD, and improve ACHD patients' access to heart failure treatments. The purpose of this review is to understand how heart failure has been considered and defined in the existing ACHD literature and to highlight the need for a definition of heart failure applicable to ACHD.

AB - As the adult congenital heart disease (ACHD) population expands and ages, the incidence and prevalence of heart failure will rise. This poses several challenges, all complicated by our nascent understanding of heart failure epidemiology, pathophysiology and management in adults with congenital heart disease. Current definitions extrapolated from acquired heart failure often disregard the unique pathophysiology of heart failure in adults with congenital heart disease. Others have suggested that congenital heart disease is the 'original heart failure syndrome' implying that all ACHD patients are destined to manifest heart failure. Neither the adoption of acquired heart failure definitions nor the belief that heart failure is the common ultimate manifestation of ACHD has advanced the care of ACHD patients. The absence of a comprehensive definition that focuses on common themes while recognizing the unique manifestations of heart failure in ACHD stifles research progress and has translated to a paucity of ACHD specific recommendations in existing heart failure guidelines. Since many ACHD heart failure patients do not meet standard definitions of heart failure their access to potentially beneficial interventions such as cardiac rehabilitation is restricted by payers and regulators taking a narrow view of acquired heart failure guidelines. ACHD heart failure definitions that can be applied in the clinical and research setting are needed to guide treatment, facilitate communication between specialists, determine the prevalence and incidence of heart failure in AHCD, and improve ACHD patients' access to heart failure treatments. The purpose of this review is to understand how heart failure has been considered and defined in the existing ACHD literature and to highlight the need for a definition of heart failure applicable to ACHD.

KW - Adult congenital heart disease

KW - Fontan

KW - Heart failure

KW - Ventricular dysfunction

UR - http://www.scopus.com/inward/record.url?scp=84933676846&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84933676846&partnerID=8YFLogxK

U2 - 10.1016/j.ppedcard.2014.12.002

DO - 10.1016/j.ppedcard.2014.12.002

M3 - Article

VL - 38

SP - 3

EP - 7

JO - Progress in Pediatric Cardiology

JF - Progress in Pediatric Cardiology

SN - 1058-9813

IS - 1-2

ER -