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Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors
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..
University of Toronto, Peter Munk Cardiac Centre, University Health Network, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portand, OR, USA..
KU Leuven - University of Leuven, School Psychology and Development in Context, Leuven, Belgium..
University of Bern, Center for Congenital Heart Disease, Inselspital - Bern University Hospital, Bern, Switzerland..
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2018 (English)In: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 251, 34-41 p.Article 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, 34-41 p.
Keyword [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.2017.10.064Scopus ID: 2-s2.0-85032353892OAI: oai:DiVA.org:hv-11799DiVA: diva2:1159609
Note

Available online 21 October 2017

Available from: 2017-11-23 Created: 2017-11-23 Last updated: 2017-12-11Bibliographically approved

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