Silke Apers

Sense of coherence and perceived physical health explain the better quality of life in adolescents with congenital heart disease

Background: Since survival rates of patients with congenital heart disease (CHD) have improved, issues beyond the quantity of life have become more important. Quality of life (QOL) has mainly been investigated in adults with CHD. Hence, research about QOL among adolescents with CHD is much needed. Aim: To compare the QOL of adolescents with CHD with that of control subjects from the general population and to explore whether sense of coherence (SOC) explains differences in QOL between patients and controls. Methods: In this cross-sectional, comparative study, we included 429 patients (229 boys; 200 girls) aged 14–18 years, who were matched to control subjects for age and sex. QOL was measured with a Linear Analogue Scale; SOC was measured using the SOC-13. Results: Median QOL score in patients was 82 (Q1=75; Q3=90). The QOL of patients was significantly (Z=−5.888; p<0.001) better than that of controls (median=80; Q1=70; Q3=85.5). Adjusted for other potentially confounding factors, linear mixed modelling showed that the better QOL in patients was explained by a higher SOC (mean=61.4±12.0 vs. 53.6±10.4) and better perceived physical health (mean=87.0±13.8 vs. 85.3±13.2). Conclusions: This study found that adolescents with CHD have a good QOL, one that is better than that of control subjects from the general population. A stronger SOC and better perceived physical health are potential resources for better QOL in patients.

Sense of coherence is a predictor of perceived health in adolescents with congenital heart disease: A cross-lagged prospective study

BACKGROUND The life expectancy of patients with congenital heart disease (CHD) has increased substantially. Health care should meet their needs through enhancing psychological functioning, quality of life, and perceived health. A possible determinant of these variables is sense of coherence (SOC). The interplay between SOC and outcome variables is not thoroughly scrutinized yet. OBJECTIVE To examine the direction of relationships between SOC and domains of perceived health in adolescents with CHD. DESIGN A longitudinal, observational study with two measurement points and a time lag of nine months. SETTING The pediatric and congenital cardiology department of a university hospital in Belgium. PARTICIPANTS Adolescents with CHD (n=429 at time 1) were recruited from the hospitals database. At time 1, mean age was 15.8 years, 53.4% were boys, and most adolescents had a moderately complex heart defect (47.6%). METHODS Participants filled out the 13-item SOC questionnaire and the PedsQL scale at both time points. Cross-lagged path analysis using structural equation modeling was conducted, controlling for age, sex, educational level, disease complexity, and prior heart surgery for CHD. RESULTS SOC at time 1 positively predicted all domains of generic perceived health (physical, emotional, social, and school functioning) and three out of five domains of disease-specific perceived health (symptoms, physical appearance, and cognitive problems) at time 2. Conversely, better school functioning and less cognitive problems at time 1 positively predicted SOC at time 2. CONCLUSIONS Evidence was obtained for reciprocal pathways between SOC and the domains of perceived health, although the predominant direction of effects was found to be from SOC to perceived health. Hence, improving SOC has the potential to enhance future perceived health of adolescents with CHD.

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.

Sense of coherence, depressive feelings and life satisfaction in older persons: a closer look at the role of integrity and despair

Objectives: The present study investigated the relationship between Antonovskys sense of coherence (SOC) and well-being in a sample of Flemish elderly. In addition, the mediating role of Eriksons 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.

Personality traits, quality of life and perceived health in adolescents with congenital heart disease

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.

Identity dynamics and peer relationship quality in adolescents with a chronic disease: the sample case of congenital heart disease.

OBJECTIVE Identity formation has been found to relate to psychosocial and disease-specific functioning in chronically ill adolescents. Therefore, examining antecedent factors of identity formation in this population is needed. The main goal of the present longitudinal study was to examine how peer relationship quality influenced identity formation in adolescents with congenital heart disease (CHD). METHOD Adolescents with CHD were selected from the database of pediatric and congenital cardiology of the University Hospitals Leuven. A total of 429 adolescents (14-18 years) with CHD participated at time 1; 401 were matched on gender and age with community controls recruited at secondary schools. Adolescents completed questionnaires on identity and peer relationship quality. Nine months later, at time 2, 382 patients again completed these questionnaires. RESULTS Adolescents with CHD were generally found to be as competent as controls in addressing the task of identity formation. Moreover, the importance of peer relationships for identity formation was demonstrated. Supportive peer relationships positively influenced the process of identifying with the identity commitments made. Furthermore, such relationships protected adolescents from getting stuck in the exploration process. Finally, reciprocal pathways were uncovered; a maladaptive exploration process was also found to negatively affect peer relationships. CONCLUSION The present study found peer relationship quality to be an important antecedent factor of identity formation in adolescents with CHD. Future research should investigate how changes in peer relationships and identity relate to well-being in these patients.

Bringing Antonovsky's salutogenic theory to life: A qualitative inquiry into the experiences of young people with congenital heart disease

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 persons 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.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 persons 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.

Uncertainties in insurances for adults with congenital heart disease

a Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands b Interuniversity Cardiology Institute of the Netherlands, Utrecht, The Netherlands c KU Leuven — University of Leuven, Department of Public Health and Primary Care, Leuven, Belgium d Department of Cardiology, University Medical Center Groningen, Groningen, The Netherlands e Department of Cardiology, Catharina Hospital, Eindhoven, The Netherlands f Department of Cardiology, St. Antonius Hospital, Nieuwegein, The Netherlands g Department of Cardiology, Isala Hospital, Zwolle, The Netherlands

Development and persistence of depressive symptoms in adolescents with CHD.

Patients with CHD are vulnerable to psychiatric disorders. The present study compared baseline depressive symptoms between adolescents with CHD and community adolescents, and also assessed the development and persistence of depressive symptoms in patients. We examined the implications of persistent depressive symptoms towards quality of life and patient-reported health. In total, 296 adolescents with CHD participated in a four-wave longitudinal study, with 9-month intervals, and completed measures of depressive symptoms - Center for Epidemiologic Studies Depression Scale (CES-D) - at time points one to four and of quality of life - linear analogue scale (LAS) - and patient-reported health - LAS and Pediatric Quality of Life Inventory - at T (time) 4. Information about diagnosis, disease complexity, and previous heart surgery was collected from medical records. At T1, 278 patients were matched 1:1 with community adolescents, based on sex and age. The findings of this study indicate that patients scored significantly lower on depressive symptoms compared with community adolescents. Depressive symptoms in the total patient sample were stable over time and were unrelated to disease complexity. Based on conventional cut-off scores of the CES-D, substantial individual differences existed in the extent to which depressive symptoms persisted over time: 12.2% of the patients reported elevated depressive symptoms at minimally three out of the four time points. Especially physical functioning, cardiac symptoms, and patient-reported health at T4 were predicted by persistent depressive symptoms, even when controlling for the level of depressive symptoms at T4. Our findings indicate that those involved in the care of adolescents with CHD should remain vigilant to persistent depressive symptoms and arrange timely referral to mental healthcare services.

Is quality of life the ultimate outcome parameter

Over the past few years, a large number of studies on quality of life (QOL) have been published in the European Journal of Cardiovascular Nursing. More specifically, from January 2011–October 2013, up to 29 empirical studies measuring QOL in a quantitative manner were published in this journal.1–29 A closer look at the characteristics of these studies shows that most of them were conducted in Europe (n=14), followed by the US (n=8) and Asia (n=7). A wide variety of patient populations were studied, including patients with heart failure (n=12), coronary artery disease (n=4), congenital heart disease (n=3), metabolic syndrome (n=2), myocardial infarction (n=2), pulmonary hypertension (n=1), atrial fibrillation (n=1), abdominal aortic aneurysm (n=1), refractory angina pectoris (n=1), an implantable cardioverter defibrillator (n=1) and patients undergoing cardiac surgery (n=1). Sample sizes ranged from 3429 to 1109 patients.17 The vast majority of these studies (n=20) used a cross-sectional design. The publications on QOL in the European Journal of Cardiovascular Nursing are illustrative of the attention that is being paid to patients’ QOL in cardiovascular nursing research worldwide. However, one might wonder if QOL deserves this much attention. In other words, is QOL still an important factor to focus on in cardiovascular nursing research? With regard to this question, the results of a recently published longitudinal study in a large sample of adolescents with congenital heart disease can be enlightening.30 This study examined how depressive symptoms, loneliness, perceived health, parental support and QOL predicted one another over time.30 The investigators used cross-lagged path analysis, which is a type of structural equation modelling that allows one to uncover the direction of relationships between variables. The results showed that depressive symptoms, loneliness, perceived health and parental support predicted QOL over time, whereas QOL in itself did not predict changes in any of these previous variables.30 Apparently, QOL was the ultimate outcome parameter in this sample of young patients with congenital heart disease. Thus, it is suggested that QOL remains an important outcome measure that deserves continuing attention. Irrespective the continuous need for research on QOL in cardiac populations, it can be questioned what kind of studies are needed to bring the body of knowledge to the next level. Most published research to date has a crosssectional design. Such a design can explore associations between variables, but does not make it possible to examine the direction of effects between QOL and other variables of interest. In order to do so, longitudinal study designs are required. Furthermore, rigorous statistical techniques to analyse longitudinal data, such as cross-lagged path analysis, ought to be applied. This type of analysis goes beyond classical association testing and, although cross-lagged results should not be interpreted as definite proof of causation, it does allow drawing conclusions on the directionality of relationships. Interestingly, six out of the 20 aforementioned cross-sectional studies on QOL, recently published in the European Journal of Cardiovascular Nursing, comment on the limitations of their study design in the discussion section.1,5,10,20,23,26 All of these studies recognize the fact that they were unable to examine causal relationships and some of them clearly recommend longitudinal research to explore the direction of effects. Another point of discussion is the appropriateness of the term health-related QOL.31 Health-related QOL has been developed to describe aspects of an individual’s subjective experience that relate both directly and indirectly to health, disease, disability and impairment,32 and the effectiveness of treatment. Health-related QOL is often operationalised by assessing physical, mental/cognitive, and social functioning domains and by relying on the WHO definition of health: ‘a state of complete physical, mental and social well-being and not merely absence of disease or infirmity’.33 However, focusing on health-related QOL, investigators may substantially Is quality of life the ultimate outcome parameter?