| 1. |
- Hageman, S., et al.
(författare)
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SCORE2 risk prediction algorithms: new models to estimate 10-year risk of cardiovascular disease in Europe
- 2021
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Ingår i: European Heart Journal. - : Oxford University Press (OUP). - 0195-668X .- 1522-9645. ; 42:25, s. 2439-2454
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Tidskriftsartikel (refereegranskat)abstract
- Aims The aim of this study was to develop, validate, and illustrate an updated prediction model (SCORE2) to estimate 10-year fatal and non-fatal cardiovascular disease (CVD) risk in individuals without previous CVD or diabetes aged 40-69 years in Europe. Methods and results We derived risk prediction models using individual-participant data from 45 cohorts in 13 countries (677 684 individuals, 30 121 CVD events). We used sex-specific and competing risk-adjusted models, including age, smoking status, systolic blood pressure, and total- and HDL-cholesterol. We defined four risk regions in Europe according to country-specific CVD mortality, recalibrating models to each region using expected incidences and risk factor distributions. Region-specific incidence was estimated using CVD mortality and incidence data on 10 776 466 individuals. For external validation, we analysed data from 25 additional cohorts in 15 European countries (1 133 181 individuals, 43 492 CVD events). After applying the derived risk prediction models to external validation cohorts, C-indices ranged from 0.67 (0.65-0.68) to 0.81 (0.76-0.86). Predicted CVD risk varied several-fold across European regions. For example, the estimated 10-year CVD risk for a 50-year-old smoker, with a systolic blood pressure of 140 mmHg, total cholesterol of 5.5 mmol/L, and HDL-cholesterol of 1.3 mmol/L, ranged from 5.9% for men in low- risk countries to 14.0% for men in very high-risk countries, and from 4.2% for women in low-risk countries to 13.7% for women in very high-risk countries. Conclusion SCORE2-a new algorithm derived, calibrated, and validated to predict 10-year risk of first-onset CVD in European populations-enhances the identification of individuals at higher risk of developing CVD across Europe.
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| 2. |
- Lu, C. W., et al.
(författare)
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Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries
- 2022
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Ingår i: Journal of the American Heart Association. - : Ovid Technologies (Wolters Kluwer Health). - 2047-9980. ; 11:9
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Heart failure (HF) is the leading cause of mortality and associated with significant morbidity in adults with congenital heart disease. We sought to assess the association between HF and patient-report outcomes in adults with congenital heart disease. METHODS AND RESULTS: As part of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study), we collected data on HF status and patient-reported outcomes in 3959 patients from 15 countries across 5 continents. Patient-report outcomes were: perceived health status (12-item Short Form Health Survey), quality of life (Linear Analogue Scale and Satisfaction with Life Scale), sense of coherence-13, psychological distress (Hospital Anxiety and Depression Scale), and illness perception (Brief Illness Perception Questionnaire). In this sample, 137 (3.5%) had HF at the time of investigation, 298 (7.5%) had a history of HF, and 3524 (89.0%) had no current or past episode of HF. Patients with current or past HF were older and had a higher prevalence of complex congenital heart disease, arrhythmias, implantable cardioverter-defibrillators, other clinical comorbidities, and mood disorders than those who never had HF. Patients with HF had worse physical functioning, mental functioning, quality of life, satisfaction with life, sense of coherence, depressive symptoms, and illness perception scores. Magnitudes of differences were large for physical functioning and illness perception and moderate for mental functioning, quality of life, and depressive symptoms. CONCLUSIONS: HF in adults with congenital heart disease is associated with poorer patient-reported outcomes, with large effect sizes for physical functioning and illness perception.
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| 3. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Gothenburg Empowerment Scale (GES): psychometric properties and measurement invariance in adults with congenital heart disease from Belgium, Norway and South Korea
- 2022
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Patient empowerment is associated with improvements in different patient-reported and clinical outcomes. However, despite being widely researched, high quality and theoretically substantiated disease-generic measures of patient empowerment are lacking. The few good instruments that are available have not reported important psychometric properties, including measurement invariance. The aim of this study was to assess the psychometric properties of the 15-item Gothenburg Empowerment Scale (GES), with a particular focus on measurement invariance of the GES across individuals from three countries. Methods Adults with congenital heart disease from Belgium, Norway and South Korea completed the GES and other patient-reported outcomes as part of an international, cross-sectional, descriptive study called APPROACH-IS II. The scale's content (missing data) and factorial validity (confirmatory factor analyses), measurement invariance (multi-group confirmatory factor analyses), responsiveness (floor and ceiling effects) and reliability (internal consistency) were assessed. Results Content validity, responsiveness and reliability were confirmed. Nonetheless, metric but not scalar measurement invariance was supported when including the three countries, possibly because the scale performed differently in the sample from South Korea. A second set of analyses supported partial scalar invariance for a sample that was limited to Norway and Belgium. Conclusion Our study offers preliminary evidence that GES is a valid and reliable measure of patient empowerment in adults with congenital heart disease. However, cross-country comparisons must be made with caution, given the scale did not perform equivalently across the three countries.
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| 4. |
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| 5. |
- Bratt, E., et al.
(författare)
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The STEPSTONES transition program for adolescents with congenital heart disease is effective in improving patient empowerment : a randomized controlled trial
- 2022
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Ingår i: European Heart Journal. - : Oxford University Press. - 0195-668X .- 1522-9645. ; 43:Suppl. 2, s. 2745-2745
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background: Congenital heart disease (CHD) is the most common birth defect, with a global birth prevalence of 8.2 per 1000 new-borns. Improvements in the diagnosis and treatment of children with CHD have resulted in increasing life prospects, with more than 90% surviving into adulthood today. To ensure expert lifetime care, patients need to transfer from paediatric-oriented care to adult-oriented care. At the same time, they need to transition from a dependent child with CHD to an independent adult who can manage living with CHD. Thus, during adolescence, patients with CHD need to acquire knowledge and skills to independently manage their health, while simultaneously experiencing a series of physical, cognitive and social changes. To facilitate this phase, transitional care is needed. However, high-level empirical evidence on the effectiveness of transitional care is scarce.Purpose: To investigate the empowering effect (primary outcome) of a structured person-centred transition programme for adolescents with CHD, and to study the effectiveness on transition readiness, patient-reported health, quality of life, health behaviours, disease-related knowledge, parental uncertainty, and parental perception of transition readiness (secondary outcomes).Methods: The STEPSTONES-CHD trial comprised a hybrid experimental design, in which a randomized controlled trial (RCT) was embedded in a longitudinal, observational study. The trial was conducted in seven CHD centres in Sweden. Two centres were allocated to the RCT-arm, randomising participants to intervention (IG) or control group (CG). The other five centres were intervention-naïve centres and served as contamination check control group (CCCG). Outcomes were measured at the age of 16 y (T0; baseline), 17y (T1) and 18.5y (T2).Results: The change in empowerment from T0 to T2 differed significantly between the IG and CG (mean difference=3.44; 95% CI: 0.27–6.65; p=0.036) in favour for IG. For the secondary outcomes, significant differences in change over time were found in parental involvement (p=0.008), CHD-specific knowledge (p=0.0002), and satisfaction with physical appearance (p=0.039). No differences in primary or secondary outcomes were detected between CG and CCCG, indicating that there was no contamination in the CG.Conclusion: The STEPSTONES-CHD trial demonstrated the effectiveness of a person-centred transition programme in empowering adolescents with CHD. Furthermore, parental involvement, satisfaction with physical appearance and CHD-related knowledge were positively influenced. This trial provides empirical underpinnings for the implementation of transition programmes for afflicted adolescents.
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| 6. |
- Raymaekers, K., et al.
(författare)
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Comparing youth with and without type 1 diabetes on perceived parenting and peer functioning: a propensity weighting approach
- 2023
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Ingår i: Journal of Behavioral Medicine. - 0160-7715. ; 46:6, s. 1032-41
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Tidskriftsartikel (refereegranskat)abstract
- The premise of this study was to gain more insight into whether type 1 diabetes (T1D) can impact how youth perceive parents and peers. To address limitations of previous observational studies comparing youth with T1D to control youth, propensity weighting was used to mimic a randomized controlled trial. A total of 558 youth with T1D and 426 control youth (14-26y) completed questionnaires on parental responsiveness, psychological control, overprotection, friend support, extreme peer orientation, and a host of background and psychological functioning variables. The groups were statistically weighted to become as comparable as possible except for disease status. The analysis plan and hypotheses were preregistered on the open science framework. Youth with T1D perceived their mothers to be more overprotective, perceived fewer friend support, and were less extremely oriented toward peers than control youth. There were no group differences for paternal overprotection and paternal and maternal responsiveness and psychological control. Mothers of youth with T1D seem at risk to practice overprotective parenting and clinicians could play an important role in making mothers aware of this risk. However, the absence of group differences for the maladaptive parenting dimension of psychological control and adaptive dimension of responsiveness are reassuring and testify to the resilient nature of youth with T1D and their families. Additionally, there is accumulating evidence that T1D could interfere with engaging in supportive friendships.
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| 7. |
- Cromhout, Pernille F, et al.
(författare)
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Supplementing prediction by EuroSCORE with social and patient-reported measures among patients undergoing cardiac surgery.
- 2021
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Ingår i: Journal of cardiac surgery. - : Hindawi Limited. - 1540-8191 .- 0886-0440. ; 36:2, s. 509-521
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Tidskriftsartikel (refereegranskat)abstract
- The risk of poor outcomes is traditionally attributed to biological and physiological processes in cardiac surgery. However, evidence exists that other factors, such as emotional, behavioral, social, and functional, are predictive of poor outcomes. Objectives were to evaluate the predictive value of several emotional, social, functional, and behavioral factors on four outcomes: death within 90 days, prolonged stay in intensive care, prolonged hospital admission, and readmission within 90 days following cardiac surgery.This prospective study included adults undergoing cardiac surgery 2013-2014, including information on register-based socioeconomic factors and self-reported health in a nested subsample. Logistic regression analyses to determine the association and incremental value of each candidate predictor variable were conducted. Multiple regression analyses were used to determine the incremental value of each candidate predictor variable, as well as discrimination and calibration based on the area under the curve (AUC) and Brier score.Of 3217 patients, 3% died, 9% had prolonged intensive care stay, 51% had prolonged hospital admission, and 39% were readmitted to hospital. Patients living alone (odds ratio, 1.19; 95% confidence interval, 1.02-1.38), with lower educational levels (1.27; 1.04-1.54) and low health-related quality of life (1.43; 1.02-2.01) had prolonged hospital admission. Analyses revealed living alone as predictive of prolonged intensive care unit (ICU) stay (Brier, 0.08; AUC, 0.68), death (0.03; 0.71), and prolonged hospital admission (0.24; 0.62).Living alone was found to supplement EuroSCORE in predicting death, prolonged hospital admission, and prolonged ICU stay following cardiac surgery. Low educational level and impaired health-related quality of life were, furthermore, predictive of prolonged hospital admission.
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| 8. |
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| 9. |
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| 10. |
- Tournoy, Tijs K, et al.
(författare)
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Biological Age in Congenital Heart Disease-Exploring the Ticking Clock.
- 2023
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Ingår i: Journal of cardiovascular development and disease. - 2308-3425. ; 10:12
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Forskningsöversikt (refereegranskat)abstract
- Over the past 50 years, there has been a major shift in age distribution of patients with congenital heart disease (CHD) thanks to significant advancements in medical and surgical treatment. Patients with CHD are, however, never cured and face unique challenges throughout their lives. In this review, we discuss the growing data suggesting accelerated aging in this population. Adults with CHD are more often and at a younger age confronted with age-related cardiovascular complications such as heart failure, arrhythmia, and coronary artery disease. These can be related to the original birth defect, complications of correction, or any residual defects. In addition, and less deductively, more systemic age-related complications are seen earlier, such as renal dysfunction, lung disease, dementia, stroke, and cancer. The occurrence of these complications at a younger age makes it imperative to further map out the aging process in patients across the spectrum of CHD. We review potential feasible markers to determine biological age and provide an overview of the current data. We provide evidence for an unmet need to further examine the aging paradigm as this stresses the higher need for care and follow-up in this unique, newly aging population. We end by exploring potential approaches to improve lifespan care.
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