Regional variation in quality of life in patients with a Fontan circulation: A multinational perspective

Nicholas D. Fogleman, Silke Apers, Philip Moons, Stacey Morrison, Samuel G. Wittekind, Martha Tomlin, Kathy Gosney, Maayke A. Sluman, Bengt Johansson, Junko Enomoto, Mikael Dellborg, Chun Wei Lu, Raghavan Subramanyan, Koen Luyckx, Werner Budts, Jamie Jackson, Adrienne Kovacs, Alexandra Soufi, Katrine Eriksen, Corina ThometMalin Berghammer, Edward Callus, Susan M. Fernandes, Maryanne Caruana, Stephen C. Cook, Andrew S. Mackie, Kamila S. White, Paul Khairy, Shelby Kutty, Gruschen Veldtman

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

Background Impaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs). Methods From the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease—International Study (APPROACH-IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale). Primary CHD diagnosis, disease complexity, surgical history, and documented history of mood and anxiety disorders were recorded. Differences in QOL, medical complications, and mood and anxiety disorders between Fontan and ASD/VSD patients, and across geographic regions, were examined using analysis of covariance. Hierarchical regression analyses were conducted to identify variables associated with the QOL ratings. Results Patients with a Fontan reported significantly lower QOL, and greater medical complications and mood and anxiety disorders relative to patients with ASD/VSD. Inpatient cardiac admissions, mood disorders, and anxiety disorders were associated with lower QOL among patients with a Fontan, and mood disorders were associated with lower QOL among patients with ASD/VSD. Regional differences for QOL were not observed in patients with a Fontan; however, significant differences were identified in patients with ASD/VSD. Conclusions Regional variation of QOL is commonplace in adults with CHD; however, it appears affected by greater disease burden. Among patients with a Fontan, regional variation of QOL is lost. Specific attempts to screen for QOL and mood and anxiety disorders among CHD patients may improve the care of patients with the greatest disease burden.

Original languageEnglish (US)
Pages (from-to)55-62
Number of pages8
JournalAmerican heart journal
Volume193
DOIs
StatePublished - Nov 1 2017
Externally publishedYes

Fingerprint

Internationality
Quality of Life
Atrial Heart Septal Defects
Ventricular Heart Septal Defects
Mood Disorders
Anxiety Disorders
Heart Diseases
North America
Medical Records
Inpatients
Patient Care

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine

Cite this

Fogleman, N. D., Apers, S., Moons, P., Morrison, S., Wittekind, S. G., Tomlin, M., ... Veldtman, G. (2017). Regional variation in quality of life in patients with a Fontan circulation: A multinational perspective. American heart journal, 193, 55-62. https://doi.org/10.1016/j.ahj.2017.07.019

Regional variation in quality of life in patients with a Fontan circulation : A multinational perspective. / Fogleman, Nicholas D.; Apers, Silke; Moons, Philip; Morrison, Stacey; Wittekind, Samuel G.; Tomlin, Martha; Gosney, Kathy; Sluman, Maayke A.; Johansson, Bengt; Enomoto, Junko; Dellborg, Mikael; Lu, Chun Wei; Subramanyan, Raghavan; Luyckx, Koen; Budts, Werner; Jackson, Jamie; Kovacs, Adrienne; Soufi, Alexandra; Eriksen, Katrine; Thomet, Corina; Berghammer, Malin; Callus, Edward; Fernandes, Susan M.; Caruana, Maryanne; Cook, Stephen C.; Mackie, Andrew S.; White, Kamila S.; Khairy, Paul; Kutty, Shelby; Veldtman, Gruschen.

In: American heart journal, Vol. 193, 01.11.2017, p. 55-62.

Research output: Contribution to journalArticle

Fogleman, ND, Apers, S, Moons, P, Morrison, S, Wittekind, SG, Tomlin, M, Gosney, K, Sluman, MA, Johansson, B, Enomoto, J, Dellborg, M, Lu, CW, Subramanyan, R, Luyckx, K, Budts, W, Jackson, J, Kovacs, A, Soufi, A, Eriksen, K, Thomet, C, Berghammer, M, Callus, E, Fernandes, SM, Caruana, M, Cook, SC, Mackie, AS, White, KS, Khairy, P, Kutty, S & Veldtman, G 2017, 'Regional variation in quality of life in patients with a Fontan circulation: A multinational perspective', American heart journal, vol. 193, pp. 55-62. https://doi.org/10.1016/j.ahj.2017.07.019
Fogleman, Nicholas D. ; Apers, Silke ; Moons, Philip ; Morrison, Stacey ; Wittekind, Samuel G. ; Tomlin, Martha ; Gosney, Kathy ; Sluman, Maayke A. ; Johansson, Bengt ; Enomoto, Junko ; Dellborg, Mikael ; Lu, Chun Wei ; Subramanyan, Raghavan ; Luyckx, Koen ; Budts, Werner ; Jackson, Jamie ; Kovacs, Adrienne ; Soufi, Alexandra ; Eriksen, Katrine ; Thomet, Corina ; Berghammer, Malin ; Callus, Edward ; Fernandes, Susan M. ; Caruana, Maryanne ; Cook, Stephen C. ; Mackie, Andrew S. ; White, Kamila S. ; Khairy, Paul ; Kutty, Shelby ; Veldtman, Gruschen. / Regional variation in quality of life in patients with a Fontan circulation : A multinational perspective. In: American heart journal. 2017 ; Vol. 193. pp. 55-62.
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abstract = "Background Impaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs). Methods From the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease—International Study (APPROACH-IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale). Primary CHD diagnosis, disease complexity, surgical history, and documented history of mood and anxiety disorders were recorded. Differences in QOL, medical complications, and mood and anxiety disorders between Fontan and ASD/VSD patients, and across geographic regions, were examined using analysis of covariance. Hierarchical regression analyses were conducted to identify variables associated with the QOL ratings. Results Patients with a Fontan reported significantly lower QOL, and greater medical complications and mood and anxiety disorders relative to patients with ASD/VSD. Inpatient cardiac admissions, mood disorders, and anxiety disorders were associated with lower QOL among patients with a Fontan, and mood disorders were associated with lower QOL among patients with ASD/VSD. Regional differences for QOL were not observed in patients with a Fontan; however, significant differences were identified in patients with ASD/VSD. Conclusions Regional variation of QOL is commonplace in adults with CHD; however, it appears affected by greater disease burden. Among patients with a Fontan, regional variation of QOL is lost. Specific attempts to screen for QOL and mood and anxiety disorders among CHD patients may improve the care of patients with the greatest disease burden.",
author = "Fogleman, {Nicholas D.} and Silke Apers and Philip Moons and Stacey Morrison and Wittekind, {Samuel G.} and Martha Tomlin and Kathy Gosney and Sluman, {Maayke A.} and Bengt Johansson and Junko Enomoto and Mikael Dellborg and Lu, {Chun Wei} and Raghavan Subramanyan and Koen Luyckx and Werner Budts and Jamie Jackson and Adrienne Kovacs and Alexandra Soufi and Katrine Eriksen and Corina Thomet and Malin Berghammer and Edward Callus and Fernandes, {Susan M.} and Maryanne Caruana and Cook, {Stephen C.} and Mackie, {Andrew S.} and White, {Kamila S.} and Paul Khairy and Shelby Kutty and Gruschen Veldtman",
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T1 - Regional variation in quality of life in patients with a Fontan circulation

T2 - A multinational perspective

AU - Fogleman, Nicholas D.

AU - Apers, Silke

AU - Moons, Philip

AU - Morrison, Stacey

AU - Wittekind, Samuel G.

AU - Tomlin, Martha

AU - Gosney, Kathy

AU - Sluman, Maayke A.

AU - Johansson, Bengt

AU - Enomoto, Junko

AU - Dellborg, Mikael

AU - Lu, Chun Wei

AU - Subramanyan, Raghavan

AU - Luyckx, Koen

AU - Budts, Werner

AU - Jackson, Jamie

AU - Kovacs, Adrienne

AU - Soufi, Alexandra

AU - Eriksen, Katrine

AU - Thomet, Corina

AU - Berghammer, Malin

AU - Callus, Edward

AU - Fernandes, Susan M.

AU - Caruana, Maryanne

AU - Cook, Stephen C.

AU - Mackie, Andrew S.

AU - White, Kamila S.

AU - Khairy, Paul

AU - Kutty, Shelby

AU - Veldtman, Gruschen

PY - 2017/11/1

Y1 - 2017/11/1

N2 - Background Impaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs). Methods From the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease—International Study (APPROACH-IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale). Primary CHD diagnosis, disease complexity, surgical history, and documented history of mood and anxiety disorders were recorded. Differences in QOL, medical complications, and mood and anxiety disorders between Fontan and ASD/VSD patients, and across geographic regions, were examined using analysis of covariance. Hierarchical regression analyses were conducted to identify variables associated with the QOL ratings. Results Patients with a Fontan reported significantly lower QOL, and greater medical complications and mood and anxiety disorders relative to patients with ASD/VSD. Inpatient cardiac admissions, mood disorders, and anxiety disorders were associated with lower QOL among patients with a Fontan, and mood disorders were associated with lower QOL among patients with ASD/VSD. Regional differences for QOL were not observed in patients with a Fontan; however, significant differences were identified in patients with ASD/VSD. Conclusions Regional variation of QOL is commonplace in adults with CHD; however, it appears affected by greater disease burden. Among patients with a Fontan, regional variation of QOL is lost. Specific attempts to screen for QOL and mood and anxiety disorders among CHD patients may improve the care of patients with the greatest disease burden.

AB - Background Impaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs). Methods From the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease—International Study (APPROACH-IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale). Primary CHD diagnosis, disease complexity, surgical history, and documented history of mood and anxiety disorders were recorded. Differences in QOL, medical complications, and mood and anxiety disorders between Fontan and ASD/VSD patients, and across geographic regions, were examined using analysis of covariance. Hierarchical regression analyses were conducted to identify variables associated with the QOL ratings. Results Patients with a Fontan reported significantly lower QOL, and greater medical complications and mood and anxiety disorders relative to patients with ASD/VSD. Inpatient cardiac admissions, mood disorders, and anxiety disorders were associated with lower QOL among patients with a Fontan, and mood disorders were associated with lower QOL among patients with ASD/VSD. Regional differences for QOL were not observed in patients with a Fontan; however, significant differences were identified in patients with ASD/VSD. Conclusions Regional variation of QOL is commonplace in adults with CHD; however, it appears affected by greater disease burden. Among patients with a Fontan, regional variation of QOL is lost. Specific attempts to screen for QOL and mood and anxiety disorders among CHD patients may improve the care of patients with the greatest disease burden.

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