scholarly journals Illness identity in adults with congenital heart disease: Longitudinal trajectories and associations with patient‐reported outcomes and healthcare use

2021 ◽  
Author(s):  
Liesbet Van Bulck ◽  
Eva Goossens ◽  
Silke Apers ◽  
Philip Moons ◽  
Koen Luyckx
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Patient Reported Outcomes ◽  
Congenital Heart ◽  
Healthcare Use ◽  
Longitudinal Trajectories ◽  
Patient Reported ◽  
Illness Identity

scholarly journals Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance

2019 ◽  
Vol 18 (6) ◽  
pp. 465-473 ◽  
Author(s):  
Liesbet Van Bulck ◽  
Koen Luyckx ◽  
Eva Goossens ◽  
Silke Apers ◽  
Adrienne H Kovacs ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Risk ◽  
Physical Health ◽  
Healthcare System ◽  
System Performance ◽  
Patient Reported Outcomes ◽  
Congenital Heart ◽  
Health Consumer ◽  
Patient Reported

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.

Patient reported outcomes are associated with physical activity level in adults with congenital heart disease

2017 ◽  
Vol 243 ◽  
pp. 174-179 ◽  
Author(s):  
Annika Bay ◽  
Mikael Dellborg ◽  
Malin Berghammer ◽  
Camilla Sandberg ◽  
Gunnar Engström ◽  
...  
Keyword(s):  
Physical Activity ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Physical Activity Level ◽  
Patient Reported Outcomes ◽  
Congenital Heart ◽  
Activity Level ◽  
Patient Reported

scholarly journals Self-efficacy as a predictor of patient-reported outcomes in adults with congenital heart disease

2018 ◽  
Vol 17 (7) ◽  
pp. 619-626 ◽  
Author(s):  
Corina Thomet ◽  
Philip Moons ◽  
Markus Schwerzmann ◽  
Silke Apers ◽  
Koen Luyckx ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Status ◽  
Self Efficacy ◽  
Patient Reported Outcomes ◽  
Congenital Heart ◽  
Health Behaviours ◽  
Patient Reported

Objective: Self-efficacy is a known predictor of patient-reported outcomes in individuals with acquired diseases. With an overall objective of better understanding patient-reported outcomes in adults with congenital heart disease, this study aimed to: (i) assess self-efficacy in adults with congenital heart disease, (ii) explore potential demographic and medical correlates of self-efficacy and (iii) determine whether self-efficacy explains additional variance in patient-reported outcomes above and beyond known predictors. Methods: As part of a large cross-sectional international multi-site study (APPROACH-IS), we enrolled 454 adults (median age 32 years, range: 18–81) with congenital heart disease in two tertiary care centres in Canada and Switzerland. Self-efficacy was measured using the General Self-Efficacy (GSE) scale, which produces a total score ranging from 10 to 40. Variance in the following patient-reported outcomes was assessed: perceived health status, psychological functioning, health behaviours and quality of life. Hierarchical multivariable linear regression analysis was performed. Results: Patients’ mean GSE score was 30.1 ± 3.3 (range: 10–40). Lower GSE was associated with female sex ( p = 0.025), not having a job ( p = 0.001) and poorer functional class ( p = 0.048). GSE positively predicted health status and quality of life, and negatively predicted symptoms of anxiety and depression, with an additional explained variance up to 13.6%. No associations between self-efficacy and health behaviours were found. Conclusions: GSE adds considerably to our understanding of patient-reported outcomes in adults with congenital heart disease. Given that self-efficacy is a modifiable psychosocial factor, it may be an important focus for interventions targeting congenital heart disease patients’ well-being.

Comparison of participants and non-participants in patient-reported outcome surveys: the case of Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study

2016 ◽  
Vol 27 (3) ◽  
pp. 427-434 ◽  
Author(s):  
Malin C. Berghammer ◽  
Eva Mattsson ◽  
Bengt Johansson ◽  
Philip Moons ◽  
Mikael Dellborg
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Status ◽  
Patient Reported Outcomes ◽  
Congenital Heart ◽  
International Study ◽  
Patient Reported Outcome ◽  
Primary Diagnosis ◽  
Effect Sizes ◽  
Patient Reported

AbstractBackgroundThe last decade has seen a vast increase in the use of patient-reported outcomes. As patient-reported outcomes are used in order to capture patients’ perspectives of their health and illness, it is a prerequisite for accurate patient-reported outcome evaluations to use representative samples. In order to evaluate representativeness, the present study focussed on the comparison between participants and non-participants in the Swedish branch of the international study APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study), regarding demographic, clinical, and health status characteristics.MethodsEligible patients for APPROACH-IS were identified and selected from SWEDCON, the Swedish registry for congenital heart disease (CHD). Overall, 912 eligible patients were identified, of whom 471 participated, 398 did not participate, and 43 were either unreachable or declined to participate in APPROACH-IS. The participants and non-participants were compared in terms of statistical significance and effect sizes.ResultsSignificant differences were observed between participants and non-participants for sex, age, primary diagnosis, number of cardiac operations, and fatigue; however, the effect sizes were in general small, except for the difference in primary diagnosis. No differences between the two groups were found in number of catheterisations, implanted device, the distribution of NYHA functional class, or health status and symptoms.ConclusionsThis study shows that participants and non-participants are relatively comparable groups, which confirms the representativeness of the participants. The Swedish data from APPROACH-IS can therefore be reliably generalised to the population of adults with CHD in Sweden.

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