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Objective: The objective of this study was to examine the hypothesis that experiences with patient-centered endometriosis care are related to the endometriosis-specific quality of life dimensions "emotional well-being" and "social support." Design: A secondary regression analysis of two cross-sectional studies was conducted. Participants/Materials: In total, data from 300 women were eligible for analysis. The participating women all had surgically proven endometriosis. Setting: The study was conducted in one secondary and two tertiary endometriosis clinics in the Netherlands. Questionnaires were disseminated between 2011 and 2016. Methods: Both included studies investigated patient-centeredness of endometriosis care and endometriosis-specific quality of life using, respectively, the ENDOCARE questionnaire (ECQ) and the Endometriosis Health Profile 30 (EHP-30). To increase power, the regression analysis focused on the previously found relation between the ten dimensions of the ECQ and the EHP-30 domains "emotional well-being" and "social support" rather than all five EHP-30 domains. After the Bonferroni correction to limit type 1 errors, the adjusted p value was 0.003 (0.05/20). Results: The participating women had a mean age of 35.7 years and had predominantly been diagnosed with moderate to severe endometriosis. None of the relations between patient-centered endometriosis care and the EHP-30 domain "emotional well-being" were significant. Three dimensions of patient-centered endometriosis care proved to be significantly related to the EHP-30 domain "social support": "information, communication, and education" (p < 0.001, beta = 0.436), "coordination and integration of care" (p = 0.001, beta = 0.307), and "emotional support and alleviation of fear and anxiety" (p = 0.002, beta = 0.259). Limitations: This cross-sectional study identified relations rather than proving causality between experiencing less patient-centeredness of care and having lower quality of life. Nevertheless, it is very tangible that some causality exists, either directly or indirectly (e.g., through empowerment) and that by improving patient-centeredness, quality of life might be improved as well. Conclusion: "Information, communication, and education"; "coordination and integration of care"; and "emotional support and alleviation of fear and anxiety" as dimensions of patient-centered endometriosis care are related to the quality of life domain "social support" of women with endometriosis. Improving the patient-centeredness of endometriosis care was already considered an important goal, but even more so given its relation with women's quality of life, which is increasingly considered the ultimate measure of health care quality. Quality improvement projects focusing on "information, communication, and education" are expected to impact women's quality of life the most. [ABSTRACT FROM AUTHOR]

The relationship between smoking and illness perceptions among congenital heart disease (CHD) survivors is unknown. The primary aims of the present study were to compare the smoking prevalence among CHD survivors to a nationally representative U.S. sample and examine the relationship between smoking and illness perceptions. CHD survivors (N = 744) from six U.S. sites participated in the study. The smoking prevalence among CHD survivors (9.3%) was lower than the general population (15.3%). However, 23.3% of CHD survivors with severe functional limitations smoked. Smoking prevalence differed by U.S. region, with a greater proportion of those attending CHD care in the Midwest reporting smoking (11.8%). The illness perception dimensions of Concern and Emotional Response were independently associated with smoking. Differences in illness perceptions enhance our understanding of smoking among CHD survivors and may guide interventions promoting positive health behaviors. The protocol for the study from which the present analyses were conducted was recorded at ClinicalTrials.gov: NCT02150603. [ABSTRACT FROM AUTHOR]

Aims: The aims of this study were to investigate the development of illness identity, the degree to which the disease is integrated into one's identity, by identifying trajectory classes in adults with congenital heart disease (CHD) and to describe these classes in terms of age, sex, disease complexity, patient‐reported outcomes (PROs) and healthcare use. Design: This three‐wave observational cohort study was carried from 2013 till 2015 and includes 276 adults (median age: 34 years; 54% men) with CHD. Methods: Illness identity entails four dimensions: engulfment, rejection, acceptance and enrichment. PROs included perceived health status, quality of life and psychological distress. Latent class growth analysis, analysis of variance, Poisson regression and negative binomial regression analyses were performed. Results: Illness identity was relatively stable over time. The identified classes were meaningfully different in terms of age, disease complexity, PROs and healthcare use. Patients who did not reject their disease, patients who were not overwhelmed or patients who accepted their disease over time reported better health status and quality of life and less psychological distress. Less hospitalizations and visits to the general practitioner and medical specialist were reported by patients who were not overwhelmed or patients who accepted their disease over time. Patients with low rejection and high enrichment scores over time reported more visits at the general practitioner. Conclusion: These findings indicate that illness identity should be taken into account when trying to understand and optimize PROs and healthcare use of adults with CHD. Impact: This study scrutinizes the development and clinical meaningfulness of illness identity measured over time for adults with CHD. Illness identity was found to be stable over time. Moreover, the illness identity trajectories differed in terms of PROs and healthcare use, showing that measuring and intervening upon illness identity could be a potential pathway to optimize PROs and healthcare use. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Previous studies have found that sense of coherence (SOC) is positively related to quality of life (QoL) in persons with chronic conditions. In congenital heart disease (CHD), the evidence is scant. Aims: We investigated (i) intercountry variation in SOC in a large international sample of adults with CHD; (ii) the relationship between demographic and clinical characteristics and SOC; (iii) the relationship between cultural dimensions of countries and SOC; and (iv) variation in relative importance of SOC in explaining QoL across the countries. Methods: APPROACH-IS was a cross-sectional, observational study, with 4028 patients from 15 countries enrolled. SOC was measured using the 13-item SOC scale (range 13–91) and QoL was assessed by a linear analog scale (range 0–100). Results: The mean SOC score was 65.5±13.2. Large intercountry variation was observed with the strongest SOC in Switzerland (68.8±11.1) and the lowest SOC in Japan (59.9±14.5). A lower SOC was associated with a younger age; lower educational level; with job seeking, being unemployed or disabled; unmarried, divorced or widowed; from a worse functional class; and simple CHD. Power distance index and individualism vs collectivism were cultural dimensions significantly related to SOC. SOC was positively associated with QoL in all participating countries and in the total sample, with an explained variance ranging from 5.8% in Argentina to 30.4% in Japan. Conclusion: In adults with CHD, SOC is positively associated with QoL. The implementation of SOC-enhancing interventions might improve QoL, but strategies would likely differ across countries given the substantial variation in explained variance. [ABSTRACT FROM AUTHOR]

Background: The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries' healthcare system on patient-reported outcomes in adults with congenital heart disease.Methods: This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.Results: Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed.Conclusions: This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn.Trial Registration: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Adults with congenital heart disease seem to be more distressed than their healthy counterparts, which might render them even more susceptible to developing detrimental health outcomes. Previous research has confirmed the relationship between the perceived impact of stress on health and self-rated health. However, it remains unknown whether sense of coherence, a person’s capacity to cope with stressors, moderates this relationship. Aim: This cross-sectional study aims to explore: the relationship between demographic and clinical characteristics, sense of coherence, and the perceived impact of stress on health; the relationship between the perceived impact of stress on health and self-rated health; and the moderating effect of sense of coherence in a sample of adults with congenital heart disease. Methods: Patients were recruited from the database of congenital and structural cardiology of a university hospital. The analytic sample included 255 patients (median age 35 years; 50% men). Data were obtained using self-report questionnaires and through medical record view. Univariate analyses and multiple regression analysis were conducted. Results: The perceived impact of stress on health was negatively associated with sense of coherence (P<0.01), but there was no significant association with demographic or clinical characteristics. The perceived impact of stress on health and self-rated health were negatively associated (P<0.001), but sense of coherence did not moderate this relationship. Conclusions: Our findings support the need for further research on the perceived impact of stress on health. Such insights can be valuable for developing interventions aimed at reducing the negative health consequences of stress in patients with congenital heart disease. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: 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. Method: For this qualitative study, patients were selected from the sample of a preceding study on development of SOC (n = 429). In total, 12 young individuals with CHD who had either a weak (n = 6) or strong SOC (n = 6) over time were interviewed (8 women, median age of 20 years). Data analysis was based on the constant comparative method as detailed in the Qualitative Analysis Guide of Leuven. Commonalities and differences between patients from both groups were explored. Results: The following themes emerged: (1) self-concept; (2) social environment; (3) daytime activities; (4) life events and disease-related turning points; (5) stress and coping; and (6) illness integration. Additionally, the degree of personal control was identified as an overarching topic that transcended the other themes when comparing both groups of patients. Conclusion: These results may have implications for the structure and content of interventions improving well-being in young people with CHD. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives:The present study investigated the relationship between Antonovsky's sense of coherence (SOC) and well-being in a sample of Flemish elderly. In addition, the mediating role of Erikson's developmental task of integrity versus despair was examined in the relationship between SOC, depression, and life satisfaction. Method:Data on sociodemographic variables, SOC, depressive symptoms, life satisfaction, ego-integrity, and despair were collected. In total, 100 older persons with a mean age of 76.5 years participated. Mplus was used to test the mediating role of integrity and despair in the relationship between SOC and both life satisfaction and depression. Results:A positive relationship between SOC and well-being was found. More precisely, elderly individuals with a strong SOC experienced less depressive symptoms and higher levels of satisfaction with their life. In addition, mediation analysis indicated that the relationship between SOC and depressive symptoms was partially mediated by the positive resolution of the integrity–despair crisis, whereas the relationship between SOC and life satisfaction was fully mediated by integrity and despair. Conclusion:Our findings indicate that SOC might be a resource for greater well-being in the elderly. Furthermore, our study offers a partial explanation for the relations found and points to the importance of finding integrity and resolving despair in this stage of life. [ABSTRACT FROM PUBLISHER]

This study investigated how the Big Five personality traits were related to quality of life and perceived health in adolescents with congenital heart disease (CHD). Adolescents with CHD were selected from the database of paediatric and congenital cardiology of the University Hospitals Leuven. A total of 366 adolescents (15–20 years) participated; 364 were matched on sex and age with community controls. Adolescents’ personality was assessed using the Quick Big Five, quality of life was measured using a Linear Analogue Scale and several domains of perceived health were assessed using the Paediatric Quality of Life Inventory. Adolescents with CHD displayed similar Big Five levels as controls, except for a lower score on Extraversion. Whereas disease-specific domains of perceived health were mainly related to Emotional Stability, several traits contributed to patients’ quality of life and generic perceived health. Hence, the present findings demonstrate that the Big Five is a valuable framework for examining linkages between personality and disease adaptation in chronic disease populations. Moreover, these findings underscore the importance of examining patients’ personality to shed light on their daily functioning. Future research should explore potential mechanisms detailing how personality influences disease adaptation over time in these patients. [ABSTRACT FROM PUBLISHER]

Objectives: The relationship between age and quality of life (QOL) in congenital heart disease (CHD) is ambiguous. Some studies observed better QOL with increasing age, whereas others found lower QOL among older patients. Furthermore, the association has typically been investigated using linear statistical methods. We aimed to assess the relationship between age and QOL in adults with CHD from a non-linear perspective, by identifying the breakpoints in age at which QOL starts to deteriorate, improve or stabilize across three categories of disease complexity. Methods: In a cross-sectional study, we enrolled 4,028 adult CHD patients (median age=32y; 53% women; 26% mild, 48% moderate, 26% complex defects) from 15 countries. A linear analog scale was used to measure QOL, ranging from 0 (worst imaginable QOL) to 100 (best imaginable QOL). Segmented regression analysis, using the SegReg Software, was performed to determine age breakpoints. To investigate the association between age and QOL before and after the breakpoints, with stratification for disease complexity, multivariable general linear mixed models with age as predictor of QOL, adjusting for other patient characteristics and with country as random effect, were applied. Results: The age breakpoints for QOL scores for mild, moderate and complex CHD were 51.8y, 43.0y, and 32.8y, respectively (Fig 1). Before the breakpoint, QOL score decreased in patients with mild (Est=-0.2; SE=0.07; p=0.009) and moderate disease (Est=-0.2; SE=0.08; p=0.004), and QOL remained stable in both groups after the breakpoint. In patients with complex CHD, the QOL score was stable before the breakpoint, but significantly decreased after (Est=-0.3; SE=0.1; p=0.019). Conclusions: QOL in adults with CHD appears related to age in a non-linear fashion. Whereas QOL remains stable after the breakpoint for patients with simple and moderate disease, patients with complex CHD are vulnerable for QOL deterioration, particularly beyond their third decade of life. [ABSTRACT FROM AUTHOR]