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.

scholarly journals Quality of life in Maltese Adults with Congenital Heart Disease: a Second Look – An APPROACH-IS Substudy

2018 ◽  
Vol 12 ◽  
Author(s):  
Maryanne Caruana ◽  
Philip Moons ◽  
Adrienne Kovacs ◽  
Koen Luyckx ◽  
Corina Thomet ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Psychiatric Disorders ◽  
Congenital Heart ◽  
Satisfaction With Life ◽  
Satisfaction With Life Scale ◽  
Surgical Interventions ◽  
Patient Reported

Background: A first quality of life (QOL) study among Maltese adults with congenital heart disease (ACHD) in 2016 found no significant differences when compared to the general population.  The aims of the present study were to (1) compare QOL between Maltese and other European ACHD patients and (2) investigate medical predictors (i.e. number of surgical/non-surgical interventions, heart failure, arrhythmias, pacemaker/implantable cardioverter-defibrillator, cardiac hospitalisation during preceding year, follow-up frequency, other medical conditions, mood/anxiety/psychiatric disorders) of QOL in Maltese patients.Methods: Data collected during “Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease–International Study” (APPROACH-IS) was used.  QOL was measured using linear analog scale (LAS) and Satisfaction With Life Scale (SWLS).  QOL in 109 Maltese and 1510 European participants was compared.  Multivariable logistic regression was used to test the predictive value of medical factors on QOL in Maltese patients.Results: There were no significant differences in QOL between the two cohorts [mean LAS Malta 80.51 (95% CI 77.96,83.07) vs. European 79.43 (95% CI 78.65,80.21) (p=0.776); mean SWLS Malta 26.00 (95% CI 24.94,27.06) vs. European 26.26 (95% CI 25.95,26.57) (p=0.288)] and no significant differences when cohorts were divided by gender and age.  Only a mood/anxiety/other psychiatric disorder significantly predicted poorer QOL on both scales in Maltese patients (LAS (ß=-.389, p<0.001), SWLS (ß=-.352, p=0.001)). Conclusions: Maltese ACHD patients have a good QOL comparable to that of European counterparts.  Mood, anxiety and other psychiatric disorders can negatively impact Maltese patients’ QOL.  Better access to clinical psychology services should be ensured.

Association between N-terminal pro-brain natriuretic peptide and quality of life in adult patients with congenital heart disease

2013 ◽  
Vol 25 (2) ◽  
pp. 288-294 ◽  
Author(s):  
John O. Younge ◽  
Jannet A. Eindhoven ◽  
Elisabeth W. M. J. Utens ◽  
Petra Opić ◽  
Judith A. A. E. Cuypers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Status ◽  
Brain Natriuretic Peptide ◽  
Natriuretic Peptide ◽  
Physical Functioning ◽  
Congenital Heart ◽  
Left Ventricular

AbstractAims: Advances in medical treatment have resulted in increased life expectancy in congenital heart disease. Consequently, the focus of management has shifted from reducing mortality to reducing long-term morbidity with the goal of improving quality of life. A predictor of quality of life might be N-terminal pro-brain natriuretic peptide, a well-established marker for heart failure. We aimed to determine the association between N-terminal pro-brain natriuretic peptide and quality of life in patients with congenital heart disease. Methods: We collected blood samples from consecutive patients who were initially operated between 1968 and 1980 (47.8% women; mean age 40.2±5.4 years). The 36-item Short-Form Health Survey was completed to assess subjective health status as a measure of quality of life. Analysis was performed for the entire group and for subgroups defined as simple versus complex congenital heart diseases. Median N-terminal pro-brain natriuretic peptide level was 15.2 pmol/L (overall range 1.3–299.3 pmol/L). N-terminal pro-brain natriuretic peptide levels were associated with the subdomain physical functioning (β=−0.074, p=0.031). This association remained significant after adjustment for age and sex (β=−0.071, p=0.038) and after adjustment for age, sex, body mass index, left ventricular function, and renal function (β=−0.069, p=0.048). In complex congenital heart disease, the association between N-terminal pro-brain natriuretic peptide and physical functioning remained significant in multivariable analysis (β=−0.076, p=0.046). No associations were found in the simple congenital heart disease group or on the other health status subdomains. Conclusion: In adults operated for congenital heart disease, N-terminal pro-brain natriuretic peptide is associated with the subdomain physical, primarily in the complex subgroup.

scholarly journals ‘Well-being paradox’ revisited: a cross-sectional study of quality of life in over 4000 adults with congenital heart disease

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e049531
Author(s):  
Caroline Sophie Andonian ◽  
Sebastian Freilinger ◽  
Stephan Achenbach ◽  
Peter Ewert ◽  
Ulrike Gundlach ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Cross Sectional Study ◽  
Secondary Outcome ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported

ObjectiveThe present cross-sectional study investigated quality of life (QOL) in a large cohort of German adults with congenital heart disease (ACHDs) in association with patient-related and clinical variables.DesignCross-sectional survey.ParticipantsBetween 2016 and 2019, a representative sample of 4014 adults with various forms of congenital heart defect (CHD) was retrospectively analysed. Inclusion criteria were confirmed diagnosis of CHD; participant aged 18 years and older; and necessary physical, cognitive and language capabilities to complete self-report questionnaires.Primary and secondary outcome measuresQOL was assessed using the 5-level EQ-5D version (EQ-5D-5L). Sociodemographic and medical information was obtained by a self-devised questionnaire. Associations of QOL with patient-reported clinical and sociodemographic variables were quantified using multiple regression analysis and multiple ordinal logit models.ResultsOverall, ACHDs (41.8±17.2 years, 46.5% female) reported a good QOL comparable to German population norms. The most frequently reported complaints occurred in the dimensions pain/discomfort (mean: 16.3, SD: p<0.001) and anxiety/depression (mean: 14.3, p<0.001). QOL differed significantly within ACHD subgroups, with patients affected by pretricuspid shunt lesions indicating the most significant impairments (p<0.001). Older age, female sex, medication intake and the presence of comorbidities were associated with significant reductions in QOL (p<0.001). CHD severity was positively associated with QOL within the dimensions of self-care (OR 0.148, 95% CI 0.04 to 0.58) and mobility (OR 0.384, 95% CI 0.19 to 0.76).ConclusionCurrent findings temper widely held assumptions among clinicians and confirm that ACHDs experience a generally good QOL. However, specific subgroups may require additional support to cope with disease-related challenges. The negative correlation of QOL with age is especially alarming as the population of ACHDs is expected to grow older in the future.Trial registration numberDRKS00017699; Results.

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.

Quality of life and health status in adults with congenital heart disease: a direct comparison with healthy counterparts

2006 ◽  
Vol 13 (3) ◽  
pp. 407-413 ◽  
Author(s):  
Philip Moons ◽  
Kristien Van Deyk ◽  
Leentje De Bleser ◽  
Kristel Marquet ◽  
Els Raes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Status ◽  
Congenital Heart

scholarly journals Patient empowerment and its correlates in young persons with congenital heart disease

2019 ◽  
Vol 18 (5) ◽  
pp. 389-398 ◽  
Author(s):  
Mariela Acuña Mora ◽  
Carina Sparud-Lundin ◽  
Åsa Burström ◽  
Katarina Hanseus ◽  
Annika Rydberg ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Illness Perception ◽  
Patient Empowerment ◽  
Health Behaviours ◽  
Transition Readiness ◽  
Patient Reported ◽  
Reported Health

Objective: The objective of this study was to measure the level of empowerment and identify its correlates in young persons with congenital heart disease. Study design: Patients aged 14–18 years with congenital heart disease, and under active follow-up in one of four paediatric cardiology centres in Sweden were invited to participate in a cross-sectional study. A total of 202 young persons returned the questionnaires. Patient empowerment was measured with the Gothenburg Young Persons Empowerment Scale that allows the calculation of total and subscale scores. Univariate and multivariate linear regression analyses were undertaken to analyse possible correlates, including: sex, age, health behaviours, knowledge of congenital heart disease, quality of life, patient-reported health, congenital heart disease complexity, transition readiness and illness perception. Results: The mean empowerment score was 54.6±10.6 (scale of 15–75). Univariate analyses showed that empowerment was associated with age, quality of life, transition readiness, illness perception, health behaviours and patient-reported health (perceived physical appearance, treatment anxiety, cognitive problems and communication issues). However, multivariable linear regression analyses identified that only transition readiness (β=0.28, P<0.001) and communication (β=0.36, P<0.001) had a positive association with patient empowerment. These variables were also significantly associated with the subscale scores of the empowerment scale of knowledge and understanding ( P<0.001), shared decision-making ( P<0.001) and enabling others ( P<0.01). The overall models’ explained variance ranged from 8% to 37%. Conclusion: Patient empowerment was associated with transition readiness and fewer problems communicating. While it is not possible to establish the directionality of the associations, interventions looking to increase empowerment could benefit from using these variables (or measurements) for evaluation purposes.

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