Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factorsUniversity Hospitals Leuven, Division of Congenital and Structural Cardiology, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven, Leuven, Belgium..
Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan..
Department of Cardiology, Academic Medical Center, Amsterdam, the Netherlands..
National Taiwan University, School of Nursing, College of MedicineTaipei, Taiwan.
Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.
Université de Montréal, Adult Congenital Heart Center, Montreal Heart Institute, Montreal, Canada..
Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, MI, USA..
Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India..
Division of Cardiology, Hospital de Niños, Córdoba, Argentina..
Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway..
University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden..
Umeå University, Department of Public Health and Clinical Medicine,Umeå, Sweden..
University of Alberta, Division of Cardiology, Stollery Children's Hospital, Edmonton, Canada.
Monash University, Monash Heart, Monash Medical Centre, Melbourne, Australia..
Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta..
Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA..
Department of Congenital Heart Disease, Louis Pradel Hospital, Hospices civils de Lyon, Lyon, France.
Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children's Hospital and Stanford Health Care, Palo Alto, CA, USA.
Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, MO, USA..
Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy..
Adult Congenital Heart Disease Center University of Nebraska Medical Center/Children's Hospital and Medical Center, Omaha, NE, USA..
KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care,Leuven, Belgium..
KU Leuven - University of Leuven, KU Leuven Department of Public Health and Primary Care,Leuven, Belgium..
Show others and affiliations
2018 (English)In: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 251, p. 34-41Article in journal (Refereed) Published
Abstract [en]
AimsGeographical 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 resultsAssessment 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.ConclusionsThis 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.
Place, publisher, year, edition, pages
2018. Vol. 251, p. 34-41
Keywords [en]
Cross-cultural comparison, Heart defects, congenital, Multilevel analysis, Quality of life, Patient-reported outcomes, Healthcare system
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-11799DOI: 10.1016/j.ijcard.2017.10.064ISI: 000416951600008PubMedID: 29107358Scopus ID: 2-s2.0-85032353892OAI: oai:DiVA.org:hv-11799DiVA, id: diva2:1159609
Note
Available online 21 October 2017
Funders: the Research Fund – KU Leuven (Leuven, Belgium) ,OT/11/033; Swedish Heart-Lung Foundation, 20130607; University of Gothenburg Centre for Person-centred Care; Cardiac Children's Foundation (Taiwan), CCF2013_02
2017-11-232017-11-232019-02-19Bibliographically approved