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- Apers, Silke, et al.
(författare)
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Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) : Rationale, design, and methods
- 2015
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 179, s. 334-342
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Tidskriftsartikel (refereegranskat)abstract
- Background: Data on patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) are inconsistent and vary across the world. Better understanding of PROs and their differences across cultural and geographic barriers can best be accomplished via international studies using uniform research methods. The APPROACH-IS consortium (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study) was created for this purpose and investigates PROs in adults with CHD worldwide. This paper outlines the project rationale, design, and methods. Methods/design: APPROACH-IS is a cross-sectional study. The goal is to recruit 3500-4000 adults with CHD from 15 countries in five major regions of the world (Asia, Australia, Europe, North and South America). Self-report questionnaires are administered to capture information on PRO domains: (i) perceived health status (12-item Short-form Health Survey & EuroQOL-5D); (ii) psychological functioning (Hospital Anxiety and Depression Scale); (iii) health behaviors (Health-Behavior Scale-Congenital Heart Disease); and (iv) quality of life (Linear Analog Scale & Satisfaction With Life Scale). Additionally, potential explanatory variables are assessed: (i) socio-demographic variables; (ii) medical history (chart review); (iii) sense of coherence (Orientation to Life Questionnaire); and (iv) illness perceptions (Brief Illness Perception Questionnaire). Descriptive analyses and multilevel models will examine differences in PROs and investigate potential explanatory variables. Discussion: APPROACH-IS represents a global effort to increase research understanding and capacity in the field of CHD, and will have major implications for patient care. Results will generate valuable information for developing interventions to optimize patients' health and well-being.
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| 2. |
- Apers, Silke, et al.
(författare)
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Bringing Antonovsky's salutogenic theory to life: A qualitative inquiry into the experiences of young people with congenital heart disease.
- 2016
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Ingår i: International journal of qualitative studies on health and well-being. - : Informa UK Limited. - 1748-2631. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Antonovsky coined sense of coherence (SOC) as the central concept of his salutogenic theory focusing on the origins of well-being. SOC captures the degree to which one perceives the world as comprehensible, manageable, and meaningful. Life events and resources are considered to be the building blocks of a person's SOC. However, mainly quantitative studies have looked into the role of life events and resources. Therefore, the present study aims to gain a deeper insight into the experiences of patients with congenital heart disease (CHD) regarding resources and life events.
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| 7. |
- Apers, Silke, et al.
(författare)
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Sense of Coherence in Young People With Congenital Heart Disease.
- 2015
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Ingår i: Journal of developmental and behavioral pediatrics : JDBP. - 1536-7312. ; 36:4, s. 267-276
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Tidskriftsartikel (refereegranskat)abstract
- Patient-reported outcomes (PROs) have been found to play a role in the development of clinical complications. Hence, it is crucial to understand why some patients do well in terms of PROs and others do not and to identify these groups of patients. Sense of coherence (SOC), capturing a person's outlook on life, is associated with PROs in adolescents with congenital heart disease (CHD). Therefore, we (1) examine how SOC develops in young people with CHD, (2) identify subgroups of SOC development, and (3) characterize subgroups in terms of demographic and clinical variables and PROs.
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| 9. |
- Callus, Edward, et al.
(författare)
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Phenotypes of adults with congenital heart disease around the globe : a cluster analysis.
- 2021
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525 .- 1477-7525. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To derive cluster analysis-based groupings for adults with congenital heart disease (ACHD) when it comes to perceived health, psychological functioning, health behaviours and quality of life (QoL).METHODS: This study was part of a larger worldwide multicentre study called APPROACH-IS; a cross sectional study which recruited 4028 patients (2013-2015) from 15 participating countries. A hierarchical cluster analysis was performed using Ward's method in order to group patients with similar psychological characteristics, which were defined by taking into consideration the scores of the following tests: Sense Of Coherence, Health Behavior Scale (physical exercise score), Hospital Anxiety Depression Scale, Illness Perception Questionnaire, Satisfaction with Life Scale and the Visual Analogue Scale scores of the EQ-5D perceived health scale and a linear analogue scale (0-100) measuring QoL.RESULTS: 3768 patients with complete data were divided into 3 clusters. The first and second clusters represented 89.6% of patients in the analysis who reported a good health perception, QoL, psychological functioning and the greatest amount of exercise. Patients in the third cluster reported substantially lower scores in all PROs. This cluster was characterised by a significantly higher proportion of females, a higher average age the lowest education level, more complex forms of congenital heart disease and more medical comorbidities.CONCLUSIONS: This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care.
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| 10. |
- Caruana, Maryanne, et al.
(författare)
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Quality of life in Maltese adults with congenital heart disease: a second look – An APPROACH-IS substudy
- 2017
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Ingår i: International Cardiovascular Forum Journal. - : International Cardiovascular Forum Journal. - 2410-2636 .- 2409-3424. ; 12, s. 18-23
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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