TY - JOUR
T1 - Patient-reported outcomes of adults with congenital heart disease from eight European countries
T2 - scrutinising the association with healthcare system performance
AU - Van Bulck, Liesbet
AU - Luyckx, Koen
AU - Goossens, Eva
AU - Apers, Silke
AU - Kovacs, Adrienne H.
AU - Thomet, Corina
AU - Budts, Werner
AU - Sluman, Maayke A.
AU - Eriksen, Katrine
AU - Dellborg, Mikael
AU - Berghammer, Malin
AU - Johansson, Bengt
AU - Caruana, Maryanne
AU - Soufi, Alexandra
AU - Callus, Edward
AU - Moons, Philip
N1 - Funding Information:
This work was supported by the Research Fund – KU Leuven (Leuven, Belgium) through grant OT/11/033; by the Swedish Heart–Lung Foundation (Sweden) through grant number 20130607; and by the University of Gothenburg Centre for Person-Centred Care (Gothenburg, Sweden). Furthermore, this work was endorsed by and conducted in collaboration with the International Society for Adult Congenital Heart Disease. The study protocol was registered at ClinicalTrials.gov: NCT02150603. https://clinicaltrials.gov/ct2/show/NCT02150603
Funding Information:
The authors would like to thank all APPROACH?IS participants and all individuals at the participating centres who made substantial contributions to APPROACH?IS. This work was supported by the Research Fund ? KU Leuven (Leuven, Belgium) through grant OT/11/033; by the Swedish Heart?Lung Foundation (Sweden) through grant number 20130607; and by the University of Gothenburg Centre for Person-Centred Care (Gothenburg, Sweden). Furthermore, this work was endorsed by and conducted in collaboration with the International Society for Adult Congenital Heart Disease. The study protocol was registered at ClinicalTrials.gov: NCT02150603. https://clinicaltrials.gov/ct2/show/NCT02150603
Publisher Copyright:
© The European Society of Cardiology 2019.
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2019/8
Y1 - 2019/8
N2 - Background: Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countries’ healthcare system performance are of importance for patient-reported outcomes. Aims: The aim of this study was to investigate the relationship between components of healthcare system performance and patient-reported outcomes in a large sample of adults with congenital heart disease. Methods: A total of 1591 adults with congenital heart disease (median age 34 years; 51% men; 32% simple, 48% moderate and 20% complex defects) from eight European countries were included in this cross-sectional study. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviours and quality of life. The Euro Health Consumer Index 2015 and the Euro Heart Index 2016 were used as measures of healthcare system performance. General linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences. Results: Health risk behaviours were associated with the Euro Health Consumer Index subdomains about patient rights and information, health outcomes and financing and access to pharmaceuticals. Perceived physical health was associated with the Euro Health Consumer Index subdomain about prevention of chronic diseases. Subscales of the Euro Heart Index were not associated with patient-reported outcomes. Conclusion: Several features of healthcare system performance are associated with perceived physical health and health risk behaviour in adults with congenital heart disease. Before recommendations for policy-makers and clinicians can be conducted, future research ought to investigate the impact of the healthcare system performance on outcomes further.
AB - Background: Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countries’ healthcare system performance are of importance for patient-reported outcomes. Aims: The aim of this study was to investigate the relationship between components of healthcare system performance and patient-reported outcomes in a large sample of adults with congenital heart disease. Methods: A total of 1591 adults with congenital heart disease (median age 34 years; 51% men; 32% simple, 48% moderate and 20% complex defects) from eight European countries were included in this cross-sectional study. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviours and quality of life. The Euro Health Consumer Index 2015 and the Euro Heart Index 2016 were used as measures of healthcare system performance. General linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences. Results: Health risk behaviours were associated with the Euro Health Consumer Index subdomains about patient rights and information, health outcomes and financing and access to pharmaceuticals. Perceived physical health was associated with the Euro Health Consumer Index subdomain about prevention of chronic diseases. Subscales of the Euro Heart Index were not associated with patient-reported outcomes. Conclusion: Several features of healthcare system performance are associated with perceived physical health and health risk behaviour in adults with congenital heart disease. Before recommendations for policy-makers and clinicians can be conducted, future research ought to investigate the impact of the healthcare system performance on outcomes further.
KW - Healthcare system performance
KW - congenital
KW - health services accessibility
KW - heart defect
KW - patient reported outcome measures
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U2 - 10.1177/1474515119834484
DO - 10.1177/1474515119834484
M3 - Article
C2 - 30808198
AN - SCOPUS:85062451438
VL - 18
SP - 465
EP - 473
JO - European Journal of Cardiovascular Nursing
JF - European Journal of Cardiovascular Nursing
SN - 1474-5151
IS - 6
ER -