Eva Goossens

Transfer of Adolescents With Congenital Heart Disease From Pediatric Cardiology to Adult Health Care An Analysis of Transfer Destinations

OBJECTIVES The transfer of adolescents with congenital heart disease from pediatric to adult care was examined. The aims were to investigate where these adolescents received adult-centered care, to determine the proportion of patients with no follow-up and with no appropriate follow-up after leaving pediatric cardiology, and to explore the determinants of no follow-up and no appropriate follow-up. BACKGROUND Even after successful treatment, many patients require lifelong cardiac surveillance by specialized practitioners. Although guidelines describe the most appropriate level of follow-up, this is not always implemented in practice. METHODS A descriptive, observational study was performed, including 794 patients with congenital heart disease examined and/or treated at a tertiary care center. RESULTS Overall, 58 of the 794 patients included (7.3%) were not in follow-up. Cessation of follow-up was found in 2 of 74 patients with complex (2.7%), 31 of 448 patients with moderate (6.9%), and 25 of 272 patients with simple (9.2%) heart defects. Moreover, 684 patients (86.1%) remained in specialized follow-up. According to international guidelines, 81 patients (10.2%) did not receive the minimal level of cardiac care. Multivariable logistic regression revealed that male sex and no prior heart surgery were associated with no follow-up. Male sex, no prior heart surgery, and greater complexity of congenital heart disease were associated with no appropriate level of cardiac follow-up. CONCLUSIONS The proportion of patients in this study lost to follow-up was substantially lower than in other Western countries. Because only patient-related factors were examined with respect to loss to follow-up, further examination of patient-related, hospital-related, and healthcare-related determinants of lack of follow-up is needed.

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.

Individual and Contextual Determinants of Quality of Life in Adolescents With Congenital Heart Disease

PURPOSE An essential goal of health care interventions is to promote quality of life. In line with recent biopsychosocial frameworks emphasizing individual and contextual resources for improving quality of life, the present prospective study aimed at identifying potential determinants of quality of life in a large sample of adolescents with congenital heart disease (CHD). In doing so, the present study focused on parental support, peer support, and sense of coherence (SOC), all representing key psychosocial constructs in adolescence. METHODS Adolescents with CHD (n at time 1 = 429; 46.6% girls) were assessed twice over a period of 9 months. Cross-lagged analysis from a structural equation modeling approach was used to examine the direction of effects among the study variables, simultaneously controlling for demographic and clinical parameters. RESULTS Important temporal sequences and developmental pathways were uncovered over time. Perceived health status, SOC, and parental support positively predicted quality of life over time; parental support was also found to positively predict SOC over time. Hence, parental support predicted both directly and indirectly (i.e., through SOC) quality of life over time. Finally, both perceived health status and SOC predicted peer support over time. CONCLUSIONS The present longitudinal study using a large sample of adolescents with a wide spectrum of congenital heart defects substantially extended our knowledge base on biopsychosocial functioning and quality of life in this population. Both individual and contextual resources need to be taken into account to shed a comprehensive picture of quality of life in adolescents with CHD.

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.

Adolescents with congenital heart disease: The importance of perceived parenting for psychosocial and health outcomes

Objective: Little is known about how parenting relates to psychosocial functioning and health behavior in adolescents with congenital heart disease (CHD). Different parenting styles were identified through relying on adolescent perceptions of multiple dimensions (regulation, responsiveness, and psychological control). The degree to which parents were perceived as consistent in their rearing style was assessed. Method: Adolescents with CHD were selected from the database of pediatric and congenital cardiology of the University Hospitals Leuven; control individuals were recruited at secondary schools. A total of 429 adolescents (14–18 years) with CHD participated; 403 were matched on gender and age with control individuals. Adolescents completed questionnaires on maternal and paternal regulation, psychological control, and responsiveness. Main outcome measures were depressive symptoms, loneliness, quality of life, health status, alcohol, cigarette, and drug use. Results: No significant differences emerged between adolescents with CHD and controls in perceived parenting styles. Democratic parenting was accompanied by the most optimal pattern of outcomes in adolescents with CHD, whereas psychologically controlling parenting by the least optimal pattern. Overprotective parenting was related to high patient substance use. Perceiving both parents as democratic turned out most favorably for psychosocial functioning and quality of life, whereas parental consistency was unrelated to substance use in adolescents with CHD. Discussion: By building bridges between the fields of adolescent medicine and family studies, the present study generated important information on the role of parents in psychosocial and behavioral functioning of adolescents with CHD. Future longitudinal studies could inform family-based interventions for this population.

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.

Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease

Background: Patients with congenital heart disease (CHD) have poor understanding of their heart condition, treatment and prevention of complications. To improve their level of health-related knowledge, a structured education program was implemented in the adult congenital heart disease program. This study aimed (a) to evaluate the level of knowledge of patients who received structured CHD education as compared to patients who did not receive this education; (b) to explore if the provision of structured education is an independent determinant of knowledge; and (c) to evaluate whether patients who received structured education reached the educational target (>80% correct answers). Methods and results: A total of 317 patients were included: 226 in the education group, and 91 in the comparison group. Knowledge was assessed using the ‘Leuven Knowledge Questionnaire for Congenital Heart Disease’. The mean total knowledge score in the education group (57%) was significantly higher as compared to the comparison group (43%) (p<0.001). However, only 24 patients (11%) in the education group reached the educational target of the program. After adjusting for patient’s age, educational level and disease complexity, hierarchical multivariable linear regression analysis showed that the provision of structured CHD education was an independent determinant of higher levels of knowledge. Conclusion: A structured education program was associated with a higher level of knowledge. However, the educational target for sufficient knowledge was reached in a very limited number of patients. Hence, continuous efforts in educating patients and developing alternative education methods are needed.

Health risk behaviors in adolescents and emerging adults with congenital heart disease: psychometric properties of the Health Behavior Scale-Congenital Heart Disease.

Background: To optimize long-term outcomes, patients with congenital heart disease (CHD) should adopt health-promoting behaviors. Studies on health behavior in afflicted patients are scarce and comparability of study results is limited. To enlarge the body of evidence, we have developed the Health Behavior Scale-Congenital Heart Disease (HBS-CHD). Aims: We examined the psychometric properties of the HBS-CHD by providing evidence for (a) the content validity; (b) validity based on the relationships with other variables; (c) reliability in terms of stability; and (d) responsiveness. Methods: Ten experts rated the relevance of the HBS-CHD items. The item content validity index (I-CVI) and the averaged scale content validity index (S-CVI/Ave); the modified multi-rater Kappa and proportion of missing values for each question were calculated. Relationships with other variables were evaluated using six hypotheses that were tested in 429 adolescents with CHD. Stability of the instrument was assessed using Heise’s method; and responsiveness was tested by calculating the Guyatt’s Responsiveness Index (GRI). Results: Overall, 86.3% of the items had a good to excellent content validity; the S-CVI/Ave (0.81) and multi-rater Kappa (0.78) were adequate. The average proportion of missing values was low (1.2%). Because five out of six hypotheses were confirmed, evidence for the validity of the HBS-CHD based on relationships with other variables was provided. The stability of the instrument could not be confirmed based on our data. The GRI showed good to excellent capacity of the HBS-CHD to detect clinical changes in the health behavior over time. Conclusion: We found that the HBS-CHD is a valid and responsive questionnaire to assess health behaviors in patients with CHD.

Sexual counselling of cardiac patients in Europe: Culture matters

Background:  Sexual problems are common amongst cardiac patients, and concerns may arise when resuming sexual activities after a cardiac event. Sexual counselling is therefore indispensible. Culture is an identified barrier to talking about sex, but research is lacking on whether and how culture influences nurses in providing sexual counselling.

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.