Philip Moons1, Adrienne H Kovacs2, Koen Luyckx3, Corina Thomet4, Werner Budts5, Junko Enomoto6, Maayke A Sluman7, Hsiao-Ling Yang8, Jamie L Jackson9, Paul Khairy10, Stephen C Cook11, Raghavan Subramanyan12, Luis Alday13, Katrine Eriksen14, Mikael Dellborg15, Malin Berghammer16, Bengt Johansson17, Andrew S Mackie18, Samuel Menahem19, Maryanne Caruana20, Gruschen Veldtman21, Alexandra Soufi22, Susan M Fernandes23, Kamila White24, Edward Callus25, Shelby Kutty26, Liesbet Van Bulck27, Silke Apers27. 1. KU Leuven Department of Public Health and Primary Care, KU Leuven - University of 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. Electronic address: philip.moons@kuleuven.be. 2. Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portand, OR, USA. 3. School Psychology and Development in Context, KU Leuven - University of Leuven, Leuven, Belgium. 4. Center for Congenital Heart Disease, Inselspital - Bern University Hospital, University of Bern, Bern, Switzerland. 5. Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven, Belgium. 6. Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan. 7. Department of Cardiology, Academic Medical Center, Amsterdam, the Netherlands. 8. School of Nursing, College of Medicine, National Taiwan University, Taipei, Taiwan. 9. Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA. 10. Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, Canada. 11. Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA. 12. Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India. 13. Division of Cardiology, Hospital de Niños, Córdoba, Argentina. 14. Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway. 15. 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. 16. Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Department of Health Sciences, University West, Trollhättan, Sweden. 17. Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden. 18. Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton, Canada. 19. Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia. 20. Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta. 21. Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. 22. Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France. 23. Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, CA, USA. 24. Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, MO, USA. 25. Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy. 26. Adult Congenital Heart Disease Center University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, NE, USA. 27. KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.
Abstract
AIMS: Geographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs. METHODS AND RESULTS: Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale-Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics. CONCLUSIONS: This international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.
AIMS: Geographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs. METHODS AND RESULTS: Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale-Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics. CONCLUSIONS: This international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.
Authors: Caroline Andonian; Jürgen Beckmann; Sabina Biber; Peter Ewert; Sebastian Freilinger; Harald Kaemmerer; Renate Oberhoffer; Lars Pieper; Rhoia Clara Neidenbach Journal: Cardiovasc Diagn Ther Date: 2018-12
Authors: Cynthia L Gong; Henu Zhao; Yifan Wei; Bryan Tysinger; Dana P Goldman; Roberta G Williams Journal: Pediatr Cardiol Date: 2020-07-10 Impact factor: 1.655
Authors: Liesbet Van Bulck; Eva Goossens; Koen Luyckx; Silke Apers; Erwin Oechslin; Corina Thomet; Werner Budts; Junko Enomoto; Maayke A Sluman; Chun-Wei Lu; Jamie L Jackson; Paul Khairy; Stephen C Cook; Shanthi Chidambarathanu; Luis Alday; 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; Philip Moons Journal: BMC Health Serv Res Date: 2020-06-03 Impact factor: 2.655
Authors: Lena Larsson; Bengt Johansson; Camilla Sandberg; Silke Apers; Adrienne H Kovacs; Koen Luyckx; Corina Thomet; Werner Budts; Junko Enomoto; Maayke A Sluman; Jou-Kou Wang; Jamie L Jackson; Paul Khairy; Stephen C Cook; Luis Alday; Katrine Eriksen; Mikael Dellborg; Malin Berghammer; Gwen Rempel; Samuel Menahem; Maryanne Caruana; Martha Tomlin; Alexandra Soufi; Susan M Fernandes; Kamila White; Edward Callus; Shelby Kutty; Philip Moons Journal: Int J Cardiol Heart Vasc Date: 2018-11-22
Authors: Rodrigo López Barreda; Alonso Guerrero; Juan Cristóbal de la Cuadra; Manuela Scotoni; Wilbaldo Salas; Fernando Baraona; Francisca Arancibia; Polentzi Uriarte Journal: PLoS One Date: 2020-10-08 Impact factor: 3.240
Authors: Edward Callus; Silvana Pagliuca; Sara Boveri; Federico Ambrogi; Koen Luyckx; Adrienne H Kovacs; Silke Apers; Werner Budts; Junko Enomoto; Maayke A Sluman; Jou-Kou Wang; Jamie L Jackson; Paul Khairy; Stephen C Cook; Shanthi Chidambarathanu; Luis Alday; Katrine Eriksen; Mikael Dellborg; Malin Berghammer; Bengt Johansson; Andrew S Mackie; Samuel Menahem; Maryanne Caruana; Gruschen Veldtman; Alexandra Soufi; Susan M Fernandes; Kamila White; Shelby Kutty; Philip Moons Journal: Health Qual Life Outcomes Date: 2021-02-10 Impact factor: 3.186