Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors

Philip Moons; Adrienne H Kovacs; Koen Luyckx; Corina Thomet; Werner Budts; Junko Enomoto; Maayke A Sluman; Hsiao-Ling Yang; Jamie L Jackson; Paul Khairy; Stephen C Cook; Raghavan Subramanyan; 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; Liesbet Van Bulck; Silke Apers; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)

doi:10.1016/j.ijcard.2017.10.064

Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors

Int J Cardiol. 2018 Jan 15:251:34-41. doi: 10.1016/j.ijcard.2017.10.064. Epub 2017 Oct 21.

Authors

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; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)

Affiliations

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: [email protected].
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.

PMID: 29107358
DOI: 10.1016/j.ijcard.2017.10.064

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.

Keywords: Cross-cultural comparison; Healthcare system; Heart defects, congenital; Multilevel analysis; Patient-reported outcomes; Quality of life.

Publication types

Clinical Trial
Multicenter Study
Observational Study

MeSH terms

Adult
Cross-Sectional Studies
Delivery of Health Care / methods
Delivery of Health Care / standards*
Female
Heart Defects, Congenital / diagnosis
Heart Defects, Congenital / epidemiology*
Heart Defects, Congenital / therapy
Humans
Internationality*
Male
Patient Reported Outcome Measures*
Self Report / standards
Socioeconomic Factors*