Philip Moons1, Koen Luyckx2, Corina Thomet3, Werner Budts4, Junko Enomoto5, Maayke A Sluman6, Chun-Wei Lu7, Jamie L Jackson8, Paul Khairy9, Stephen C Cook10, Shanthi Chidambarathanu11, Luis Alday12, Katrine Eriksen13, Mikael Dellborg14, Malin Berghammer15, Bengt Johansson16, Andrew S Mackie17, Samuel Menahem18, Maryanne Caruana19, Gruschen Veldtman20, Alexandra Soufi21, Susan M Fernandes22, Kamila White23, Edward Callus24, Shelby Kutty25, Fouke Ombelet26, Silke Apers26, Adrienne H Kovacs27. 1. KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa. Electronic address: philip.moons@kuleuven.be. 2. KU Leuven School Psychology and Development in Context, KU Leuven, Leuven, Belgium; UNIBS, University of the Free State, Bloemfontein, South Africa. 3. KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium; Center for Congenital Heart Disease, Department of Cardiology, Inselspital-Bern University Hospital, University of Bern, Bern, Switzerland. 4. Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, KU Leuven, Leuven, Belgium. 5. Department of Education, Toyo University, Tokyo, Japan. 6. Coronel Institute of Occupational Health, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands; Department of Cardiology, Jeroen Bosch Hospital, 's Hertogenbosch, The Netherlands. 7. Adult Congenital Heart Center, Department of Pediatrics, National Taiwan University Children's Hospital, Taipei, Taiwan. 8. Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio, USA. 9. Adult Congenital Heart Center, Montréal Heart Institute, Université de Montréal, Quebec, Canada. 10. Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, Michigan, USA. 11. Pediatric Cardiology, Frontier Lifeline Hospital (Dr K. M. Cherian Heart Foundation), Chennai, India. 12. Division of Cardiology, Hospital de Niños, Córdoba, Argentina. 13. Adult Congenital Heart Disease Center, Oslo University Hospital-Rikshospitalet, Oslo, Norway. 14. Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden. 15. Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Department of Health Sciences, University West, Trollhättan, Sweden; Department of Paediatrics, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden. 16. Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden. 17. Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton, Alberta, Canada. 18. Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia. 19. Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta. 20. Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA. 21. Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France. 22. Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, California, USA. 23. Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, St Louis, Missouri, USA. 24. Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy; Department of Biomedical Sciences for Health, Università degli Studi di Milano, Milan, Italy. 25. Adult Congenital Heart Disease Center University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, Nebraska, USA; Taussig Heart Center, Johns Hopkins School of Medicine, Baltimore, Maryland, USA. 26. KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium. 27. Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Ontario, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portland, Oregon, USA.
Abstract
BACKGROUND: We compared physical functioning, mental health, and quality of life (QoL) of patients with different subtypes of congenital heart disease (CHD) in a large international sample and investigated the role of functional class in explaining the variance in outcomes across heart defects. METHODS: In the cross-sectional Assessment of Patterns of Patient-Reported Outcome in Adults with Congenital Heart Disease-International Study (APPROACH-IS), we enrolled 4028 adult patients with CHD from 15 countries. Diagnostic groups with at least 50 patients were included in these analyses, yielding a sample of 3538 patients (median age: 32 years; 52% women). Physical functioning, mental health, and QoL were measured with the SF-12 health status survey, Hospital Anxiety and Depression Scale (HADS), linear analog scale (LAS) and Satisfaction with Life Scale, respectively. Functional class was assessed using the patient-reported New York Heart Association (NYHA) class. Multivariable general linear mixed models were applied to assess the relationship between the type of CHD and patient-reported outcomes, adjusted for patient characteristics, and with country as random effect. RESULTS: Patients with coarctation of the aorta and those with isolated aortic valve disease reported the best physical functioning, mental health, and QoL. Patients with cyanotic heart disease or Eisenmenger syndrome had worst outcomes. The differences were statistically significant, above and beyond other patient characteristics. However, the explained variances were small (0.6% to 4.1%) and decreased further when functional status was added to the models (0.4% to 0.9%). CONCLUSIONS: Some types of CHD predict worse patient-reported outcomes. However, it appears that it is the functional status associated with the heart defect rather than the heart defect itself that shapes the outcomes.
BACKGROUND: We compared physical functioning, mental health, and quality of life (QoL) of patients with different subtypes of congenital heart disease (CHD) in a large international sample and investigated the role of functional class in explaining the variance in outcomes across heart defects. METHODS: In the cross-sectional Assessment of Patterns of Patient-Reported Outcome in Adults with Congenital Heart Disease-International Study (APPROACH-IS), we enrolled 4028 adult patients with CHD from 15 countries. Diagnostic groups with at least 50 patients were included in these analyses, yielding a sample of 3538 patients (median age: 32 years; 52% women). Physical functioning, mental health, and QoL were measured with the SF-12 health status survey, Hospital Anxiety and Depression Scale (HADS), linear analog scale (LAS) and Satisfaction with Life Scale, respectively. Functional class was assessed using the patient-reported New York Heart Association (NYHA) class. Multivariable general linear mixed models were applied to assess the relationship between the type of CHD and patient-reported outcomes, adjusted for patient characteristics, and with country as random effect. RESULTS:Patients with coarctation of the aorta and those with isolated aortic valve disease reported the best physical functioning, mental health, and QoL. Patients with cyanotic heart disease or Eisenmenger syndrome had worst outcomes. The differences were statistically significant, above and beyond other patient characteristics. However, the explained variances were small (0.6% to 4.1%) and decreased further when functional status was added to the models (0.4% to 0.9%). CONCLUSIONS: Some types of CHD predict worse patient-reported outcomes. However, it appears that it is the functional status associated with the heart defect rather than the heart defect itself that shapes the outcomes.
Authors: Matthew E Oster; Aspen P Riser; Jennifer G Andrews; Elijah H Bolin; Maureen K Galindo; Wendy N Nembhard; Charles E Rose; Sherry L Farr Journal: MMWR Morb Mortal Wkly Rep Date: 2021-02-12 Impact factor: 17.586
Authors: Chun-Wei Lu; Jou-Kou Wang; Hsiao-Ling Yang; Adrienne H Kovacs; Koen Luyckx; Francisco Javier Ruperti-Repilado; Alexander Van De Bruaene; Junko Enomoto; Maayke A Sluman; Jamie L Jackson; Paul Khairy; Stephen C Cook; Shanthi Chidambarathanu; Luis Alday; Erwin Oechslin; Katrine Eriksen; Mikael Dellborg; Malin Berghammer; Bengt Johansson; Andrew S Mackie; Samuel Menahem; Maryanne Caruana; Gruschen Veldtman; Alexandra Soufi; Susan M Fernandes; Kamila White; Edward Callus; Shelby Kutty; Silke Apers; Philip Moons Journal: J Am Heart Assoc Date: 2022-04-26 Impact factor: 6.106