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

被引：19

作者：

Fogleman, Nicholas D. ^{[1
,2
]}

Apers, Silke ^{[3
,4
]}

Moons, Philip ^{[3
,5
]}

Morrison, Stacey ^{[1
]}

Wittekind, Samuel G. ^{[1
]}

Tomlin, Martha ^{[1
]}

Gosney, Kathy ^{[1
]}

Sluman, Maayke A. ^{[6
]}

Johansson, Bengt ^{[7
]}

Enomoto, Junko ^{[8
]}

Dellborg, Mikael ^{[5
]}

Lu, Chun-Wei ^{[9
]}

Subramanyan, Raghavan ^{[10
]}

Luyckx, Koen ^{[11
]}

Budts, Werner ^{[12
]}

Jackson, Jamie ^{[13
]}

Kovacs, Adrienne ^{[14
]}

Soufi, Alexandra ^{[15
]}

Eriksen, Katrine ^{[16
]}

Thomet, Corina ^{[17
]}

Berghammer, Malin ^{[18
,19
]}

Callus, Edward ^{[20
]}

Fernandes, Susan M. ^{[21
]}

Caruana, Maryanne ^{[22
]}

Cook, Stephen C. ^{[23
]}

Mackie, Andrew S. ^{[24
]}

White, Kamila S. ^{[25
,26
,27
]}

Khairy, Paul ^{[28
]}

Kutty, Shelby ^{[29
,30
]}

Veldtman, Gruschen ^{[1
]}

机构：

[1] Cincinnati Childrens Hosp Med Ctr, Cincinnati, OH 45229 USA

[2] Univ Louisville, Dept Psychol & Brain Sci, Louisville, KY 40292 USA

[3] KU Leuven Dept Publ Hlth & Primary Care, Leuven, Belgium

[4] KU Leuven Dept Dev & Regenerat, Leuven, Belgium

[5] Univ Gothenburg, Inst Hlth & Care Sci, Sahlgrenska Acad, Gothenburg, Sweden

[6] Acad Med Ctr, Amsterdam, Netherlands

[7] Univ Hosp Umea, Umea, Sweden

[8] Chiba Cardiovasc Ctr, Dept Adult Congenital Heart Dis, Chiba, Japan

[9] Natl Taiwan Univ Hosp, Dept Pediat, Taipei, Taiwan

[10] Frontier Lifeline Hosp, Chennai, Tamil Nadu, India

[11] Katholieke Univ Leuven, Sch Psychol & Child & Adolescent Dev, Leuven, Belgium

[12] Univ Hosp Leuven, Div Congenital & Struct Cardiol, Leuven, Belgium

[13] Ohio State Coll Med, Nationwide Childrens Hosp, Columbus Ohio Adult Congenital Heart Dis Program, Columbus, OH USA

[14] Univ Hlth Network, Peter Munk Cardiac Ctr, Toronto Congenital Cardiac Ctr Adults, Toronto, ON, Canada

[15] Hosp Louis Pradel, Lyon, France

[16] Oslo Univ Hosp, Rikshosp, Oslo, Norway

[17] Univ Bern, Bern Univ Hosp, Inselspital, Ctr Congenital Heart Dis, Bern, Switzerland

[18] Univ Gothenburg, Ctr Person CentredCare GPCC, Gothenburg, Sweden

[19] Univ West, Dept Hlth Sci, Trollhattan, Sweden

[20] IRCCS Policlin San Donato, Clin Psychol Serv, Milan, Italy

[21] Stanford Hosp & Clin, Stanford, CA USA

[22] MaterDei Hosp, Dept Cardiol, Msida, Malta

[23] UPMC, Childrens Hosp Pittsburgh, Heart Inst, AdultCongenitalHeart Dis Ctr, Pittsburgh, PA USA

[24] Univ Alberta, Edmonton, AB, Canada

[25] Washington Univ, St Louis, MO USA

[26] Barnes Jewish Heart & Vasc, St Louis, MO USA

[27] Univ Missouri, St Louis, MO USA

[28] Montreal Heart Inst, Congenital Heart Ctr, Montreal, PQ, Canada

[29] Univ Nebraska Med Ctr, Childrens Hosp, Omaha, NE USA

[30] Med Ctr, Omaha, NE USA

来源：

AMERICAN HEART JOURNAL | 2017年 / 193卷

关键词：

CONGENITAL HEART-DISEASE; REPORTED OUTCOMES; HEALTH-STATUS; ADULTS; ADOLESCENTS; COMPLICATIONS; EXPERIENCES; PATTERNS; CHILDREN; SINGLE;

D O I：

10.1016/j.ahj.2017.07.019

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

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.

引用

页码：55 / 62

页数：8

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