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

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

Phenotypes of adults with congenital heart disease around the globe: a cluster analysis

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

"What does not kill you makes you stronger": Sense of coherence in adolescents and adults with congenital heart disease

Chronic disease is the major cause of morbidity and mortality worldwide, resulting in significant economic and human costs. Therefore, studies need to investigate the underlying mechanisms fostering a process of successful coping in patients with a chronic disease. Unraveling such mechanisms is crucial as they can identify potential targets and strategies for interventions improving health and well-being in patients. In this respect, a meaningful psychological concept is sense of coherence (SOC). SOC represents a person’s general outlook on life and is enhanced by a feeling of high comprehensibility, manageability, and meaningfulness. The theory of SOC explains why some individuals successfully adapt to major or chronic stressors (e.g., a chronic disease), whereas others do not. Hence, one’s ability to cope with stressors depends largely on the strength of one’s SOC. For this PhD project, congenital heart disease (CHD) was considered as a sample case to study the role of SOC in chronic disease. CHD means that there is a problem with the structure and function of the heart and/or large vessels that is present at birth. Because CHD is a prevalent and life-long condition, these patients’ health and well-being is a considerable public health issue. Hence, the overall aim of this PhD project was to gain insight into whether SOC strengthens patients with CHD by (1) examining the development of SOC in young patients with CHD; (2) by looking at the relationship between SOC and patient-reported outcomes (e.g., quality of life) in adolescents and adults with CHD; and (3) by investigating the generalizability of our findings to an international sample of adults with CHD. First, we identified four different subgroups of SOC development, including patients with a Consistently High, an Intermediate Stable, an Intermediate Decreasing, and a Chronically Low SOC. Patients from the former two subgroups scored better in terms of quality of life, loneliness, depressive symptoms, and perceived health as compared to patients from the latter two subgroups. Subsequently, we conducted interviews with patients from the Consistently High and the Chronically Low subgroup to have a closer look at the role of resources and life events on SOC. This study showed that patients from both SOC-groups did not differ in terms of having experienced negative life events, but they did differ in terms of the availability and use of resources to deal with such events. For example, patients with a strong SOC appeared to have more knowledge about their disease and a broader social support network. Second, in terms of the relationship between SOC and patient-reported outcomes, we learned that SOC is a unique factor in explaining the quality of life in adolescents with CHD. Furthermore, our analysis showed that the stronger patients’ SOC was, the less patients believed that stress affected their health. Conversely, the more patients believed that stress affected their health, the poorer their subjective health status was. Finally, SOC was found to predict changes in different domains of subjective health status over time in adolescents with CHD. These are very important findings because subjective health status is a powerful predictor of objective health outcomes. In sum, these studies confirmed the significant impact of SOC on patient-reported outcomes. Third, we conducted an international study in 15 different countries across the world on patient-reported outcomes in adults with CHD, called APPROACH-IS. We found that quality of life in adults with CHD varied across countries and is related to patient characteristics (e.g., age) but not to country-specific characteristics (e.g., cultural dimensions), which indicates that similar interventions to improve quality of life may be designed for and implemented in different countries. In addition, we found that SOC in adults with CHD differs between countries and that SOC was positively associated to quality of life in all countries, confirming that SOC is a universally meaningful concept. In conclusion, the results of this PhD project point to SOC as an important target for intervention programs aimed at improving the health and well-being of individuals with a chronic condition. More specifically, the relevance of designing interventions targeting SOC was confirmed because of its relationship with clinically meaningful patient-reported outcomes. Relatedly, we showed that SOC can serve as a pathway for identifying patients with CHD suffering from greater psychosocial struggles who may be in need of an intervention. Furthermore, the international study indicated that these findings are of importance to patients with CHD across the world. Finally, we discussed SOC-shaping factors from the patient’s perspective (e.g., social support) that can be relevant to address during intervention programs. Recommendations are made concerning the timing, content, and structure for interventions. Healthcare professionals, and nurses in particular, could fulfill the role of coach by encouraging, empowering, guiding, assisting, and supporting their patients in the recovery or adaptation process. Future studies should evaluate the effectiveness of interventions and examine the relationship between SOC and clinical outcomes, such as mortality.status: publishe

Quality of Life of Adults With Congenital Heart Disease in 15 Countries Evaluating Country-Specific Characteristics

BACKGROUND Measuring quality of life (QOL) is fundamental to understanding the impact of disease and treatment on patients' lives. ;OBJECTIVES This study aimed to explore QOL in an international sample of adults with congenital heart disease (CHD), the association between patient characteristics and QOL, and international variation in QOL and its relationship to country-specific characteristics. ;METHODS We enrolled 4,028 adults with CHD from 15 countries. QOL was assessed using a linear analog scale (LAS) (0 to 100) and the Satisfaction with Life Scale (SWLS) (5 to 35). Patient characteristics included sex, age, marital status, educational level, employment status, CHD complexity, and patient-reported New York Heart Association (NYHA) functional class. Country-specific characteristics included general happiness and 6 cultural dimensions. Linear mixed models were applied. ;RESULTS Median QOL was 80 on the LAS and 27 on the SWLS. Older age, lack of employment, no marriage history, and worse NYHA functional class were associated with lower QOL (p < 0.001). Patients from Australia had the highest QOL (LAS: 82) and patients from Japan the lowest (LAS: 72). Happiness scores and cultural dimensions were not associated with variation in QOL after adjustment for patient characteristics and explained only an additional 0.1% of the variance above and beyond patient characteristics (p = 0.56). ;CONCLUSIONS This large-scale, international study found that overall QOL in adults with CHD was generally good. Variation in QOL was related to patient characteristics but not country-specific characteristics. Hence, patients at risk for poorer QOL can be identified using uniform criteria. General principles for designing interventions to improve QOL can be developed. (C) 2016 by the American College of Cardiology Foundation

Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS): Rationale, design, and methods

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. (C) 2014 Elsevier Ireland Ltd. All rights reserved

How meaningful is sense of coherence to cardiovascular nursing?

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Is quality of life the ultimate outcome parameter?

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Unravelling the role of sense of coherence: More research is needed to empirically underpin the construct

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Quality of life in adult congenital heart disease: what do we already know and what do we still need to know?

Quality of life (QOL) is a key outcome in patients with congenital heart disease (CHD) because CHD has become a chronic condition accompanied by lifelong impairments. Recently, published studies on QOL in adults with CHD have reported inconsistent findings. Patients' QOL seems to depend on multiple factors and is not solely determined by their heart defect and various medical or demographic characteristics. For instance, evidence suggests that a strong sense of coherence might be an important pathway to improve QOL. However, studies on QOL and its determinants are characterized by important methodological differences and limitations, making it impossible to draw firm conclusions. To fill the gaps in the current evidence base, longitudinal and international research is needed. Furthermore, the research field on QOL in CHD should move on from observational studies to interventional research to guide health professionals in improving QOL.status: publishe