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 & 9 others 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)

Research output: Contribution to journalArticleResearchpeer-review

17 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
Pages (from-to)34-41
Number of pages8
JournalInternational Journal of Cardiology
Volume251
DOIs
Publication statusPublished - 15 Jan 2018

Keywords

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

Cite this

Moons, P., Kovacs, A. H., Luyckx, K., Thomet, C., Budts, W., Enomoto, J., ... 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, 251, 34-41. https://doi.org/10.1016/j.ijcard.2017.10.064
Moons, Philip ; Kovacs, Adrienne H. ; Luyckx, Koen ; Thomet, Corina ; Budts, Werner ; Enomoto, Junko ; Sluman, Maayke A. ; Yang, Hsiao Ling ; Jackson, Jamie L. ; Khairy, Paul ; Cook, Stephen C. ; Subramanyan, Raghavan ; Alday, Luis ; Eriksen, Katrine ; Dellborg, Mikael ; Berghammer, Malin ; Johansson, Bengt ; Mackie, Andrew S. ; Menahem, Samuel ; Caruana, Maryanne ; Veldtman, Gruschen ; Soufi, Alexandra ; Fernandes, Susan M. ; White, Kamila ; Callus, Edward ; Kutty, Shelby ; Van Bulck, Liesbet ; Apers, Silke ; 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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title = "Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors",
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",
author = "Philip Moons and Kovacs, {Adrienne H.} and Koen Luyckx and Corina Thomet and Werner Budts and Junko Enomoto and Sluman, {Maayke A.} and Yang, {Hsiao Ling} and Jackson, {Jamie L.} and Paul Khairy and Cook, {Stephen C.} and Raghavan Subramanyan and Luis Alday and Katrine Eriksen and Mikael Dellborg and Malin Berghammer and Bengt Johansson and Mackie, {Andrew S.} and Samuel Menahem and Maryanne Caruana and Gruschen Veldtman and Alexandra Soufi and Fernandes, {Susan M.} and Kamila White and Edward Callus and Shelby Kutty and {Van Bulck}, Liesbet and Silke Apers and {APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)}",
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Moons, P, Kovacs, AH, Luyckx, K, Thomet, C, Budts, W, Enomoto, J, Sluman, MA, Yang, HL, Jackson, JL, Khairy, P, Cook, SC, Subramanyan, R, Alday, L, Eriksen, K, Dellborg, M, Berghammer, M, Johansson, B, Mackie, AS, Menahem, S, Caruana, M, Veldtman, G, Soufi, A, Fernandes, SM, White, K, Callus, E, Kutty, S, Van Bulck, L, Apers, S & 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

Patient-reported outcomes in adults with congenital heart disease : Inter-country variation, standard of living and healthcare system factors. / Moons, Philip; Kovacs, Adrienne H.; Luyckx, Koen; Thomet, Corina; Budts, Werner; Enomoto, Junko; Sluman, Maayke A.; Yang, Hsiao Ling; Jackson, Jamie L.; Khairy, Paul; Cook, Stephen C.; Subramanyan, Raghavan; Alday, Luis; Eriksen, Katrine; Dellborg, Mikael; Berghammer, Malin; Johansson, Bengt; Mackie, Andrew S.; Menahem, Samuel; Caruana, Maryanne; Veldtman, Gruschen; Soufi, Alexandra; Fernandes, Susan M.; White, Kamila; Callus, Edward; Kutty, Shelby; Van Bulck, Liesbet; Apers, Silke; 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 journalArticleResearchpeer-review

TY - JOUR

T1 - Patient-reported outcomes in adults with congenital heart disease

T2 - Inter-country variation, standard of living and healthcare system factors

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

AU - Alday, Luis

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

AU - Soufi, Alexandra

AU - Fernandes, Susan M.

AU - White, Kamila

AU - Callus, Edward

AU - Kutty, Shelby

AU - Van Bulck, Liesbet

AU - Apers, Silke

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

PY - 2018/1/15

Y1 - 2018/1/15

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.

AB - 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.

KW - Cross-cultural comparison

KW - Healthcare system

KW - Heart defects, congenital

KW - Multilevel analysis

KW - Patient-reported outcomes

KW - Quality of life

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