Patient-reported outcomes in adults with congenital heart disease

Inter-country variation, standard of living and healthcare system factors

on behalf of the, APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)

Research output: Contribution to journalArticle

16 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)34-41
Number of pages8
JournalInternational Journal of Cardiology
Volume251
DOIs
StatePublished - Jan 15 2018

Fingerprint

Heart Diseases
Delivery of Health Care
Health Behavior
Patient Reported Outcome Measures
Quality of Life
Gross Domestic Product
Unemployment
Health
Human Development
Health Expenditures
Health Surveys
Visual Analog Scale
Switzerland
Self Report
Observational Studies
India
Anxiety
Cross-Sectional Studies
Depression
Psychology

Keywords

  • Cross-cultural comparison
  • Healthcare system
  • Heart defects, congenital
  • Multilevel analysis
  • Patient-reported outcomes
  • Quality of life

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine

Cite this

Patient-reported outcomes in adults with congenital heart disease : Inter-country variation, standard of living and healthcare system factors. / on behalf of the; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD).

In: International Journal of Cardiology, Vol. 251, 15.01.2018, p. 34-41.

Research output: Contribution to journalArticle

on behalf of the & APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD) 2018, 'Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors', International Journal of Cardiology, vol. 251, pp. 34-41. https://doi.org/10.1016/j.ijcard.2017.10.064
on behalf of the ; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). / Patient-reported outcomes in adults with congenital heart disease : Inter-country variation, standard of living and healthcare system factors. In: International Journal of Cardiology. 2018 ; Vol. 251. pp. 34-41.
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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.",
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AU - Moons, Philip

AU - Kovacs, Adrienne H.

AU - Luyckx, Koen

AU - Thomet, Corina

AU - Budts, Werner

AU - Enomoto, Junko

AU - Sluman, Maayke A.

AU - Yang, Hsiao Ling

AU - Jackson, Jamie L.

AU - Khairy, Paul

AU - Cook, Stephen C.

AU - Subramanyan, Raghavan

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AU - Eriksen, Katrine

AU - Dellborg, Mikael

AU - Berghammer, Malin

AU - Johansson, Bengt

AU - Mackie, Andrew S.

AU - Menahem, Samuel

AU - Caruana, Maryanne

AU - Veldtman, Gruschen

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N2 - 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.

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KW - Cross-cultural comparison

KW - Healthcare system

KW - Heart defects, congenital

KW - Multilevel analysis

KW - Patient-reported outcomes

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