Preferences for disease-related information and transitional skills among adolescents with congenital heart disease in the early transitional stage

INTRODUCTION AND AIMS The transition towards adult-focused healthcare comprises a complex process through which adolescents with congenital heart disease (CHD) should be carefully guided. Various task forces encourage implementing person-tailored transition programs, but detailed data on adolescents' preferences regarding disease-related information and acquirable transitional skills are mostly lacking. This study examined these preferences towards adolescents with moderately and severely complex CHD. MATERIALS AND METHODS A cross-sectional descriptive study including logistic regression analysis was performed in a Belgian tertiary CHD center with adolescents recruited from “Transition With a Heart” (TWAH). For this 4-year transition program, adolescents were invited to complete a communication paper (focused on the need for information) and an individualized transition plan (focused on the evaluation of transitional skills) prior to an outpatient visit. Only questionnaires completed in the early transition stage, from January 2016 to August 2021, were used for data analysis. RESULTS Forty-nine adolescents completed both questionnaires at an average age of 15.9±1.2 years. Of all adolescents, 59% indicated the need for information about the heart defect and surgical treatment, followed by 45% that expressed the need for information about sports and medication; and ≤27% regarding psychosocially-related topics. The proportion of girls needing information was larger than boys. Significantly more girls than boys requested information about surgeries (76% versus 46%; p=0.04). Younger adolescents were more likely to express a need for information about most topics and significantly more likely regarding surgeries (odds ratio=0.53; 95% CI [0.26 to 0.88]; p=0.03). A maximum of 14% of adolescents were interested in acquiring transitional skills. Larger proportions of adolescents perceived the relevant transitional skills as insufficient, from 21% to 83%. CONCLUSION The preferences for disease-related information of adolescents with CHD are mainly related to medical topics and tend to decrease with increasing age. This motivates timely gauging of individual information needs and delivering disease-related information, ideally in the early teens. Furthermore, preferences varied according to gender, with more information requested by girls. Adolescents expressed minimal needs to acquire transitional skills despite the low self-perceived skills levels. This paradox requires further research to enable the adaptation of transition interventions

PA1 different levels of care for follow-up of adults with congenital heart disease

Objectives Previous research in adult congenital heart disease (ACHD) patients suggested better clinical and managerial outcomes following specialized over general cardiac follow-up. The impact of different care levels, such as shared care, remained uninvestigated. Methods Propensity score analyses were performed on the BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC). Adult patients who ever attended a specialized congenital cardiology clinic (N=6,579) were categorized in five care levels based on their cardiac follow-up pattern between 2006 and 2010. Medium-term (2011-2015) economic outcomes were medical costs and resource use (i.e., hospitalizations and emergency department visits). Results Respectively 51.5% and 80% of patients with moderate and mild lesions were categorized in the general cardiac care (GCC) or no cardiac care group (NCC). In patients with moderate lesions, highly specialized cardiac care (HSC; exclusive follow-up by ACHD specialists) and shared care with predominantly specialized cardiac care (SC+) were associated with significantly lower medical costs and resource use compared to shared care with predominantly general cardiac care (SC-) and GCC. In the patient population with mild lesions, HSC was associated with better economic outcomes than SC- and GCC, but SC+ was not. HSC was associated with fewer hospitalizations (-33%) and less pharmaceutical costs (-46.3%) compared to SC+. Patients with mild and moderate lesions in the NCC group had better economic outcomes than those in the GCC and SC- groups, but post-hoc analysis revealed that they had a different patient profile than patients under cardiac care. Conclusions More specialized care levels are associated with better economic outcomes in patients with mild or moderate lesions in cardiac follow-up. Shared care with strong involvement of ACHD specialists might be a management option to consider. Characteristics of patients without cardiac follow-up but good medium-term economic prospects should be further scrutinize

Different levels of care for follow-up of adults with congenital heart disease : a cost analysis scrutinizing the impact on medical costs, hospitalizations, and emergency department visits

Aim To scrutinize the economic impact of different care levels, such as shared care, in the follow-up of adult congenital heart disease (ACHD) patients. Methods The BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC) was analyzed. Patients (N = 6579) were categorized into five care levels based on their cardiac follow-up pattern between 2006 and 2010. Medical costs, hospitalizations, and emergency department visits were measured between 2011 and 2015. Results In patients with moderate lesions, highly specialized cardiac care (HSC; exclusive follow-up by ACHD specialists) and shared care with predominantly specialized cardiac care (SC+) were associated with significantly lower medical costs and resource use compared to shared care with predominantly general cardiac care (SC-) and general cardiac care (GCC). In the patient population with mild lesions, HSC was associated with better economic outcomes than SC- and GCC, but SC+ was not. HSC was associated with fewer hospitalizations (- 33%) and less pharmaceutical costs (- 46.3%) compared to SC+. Patients with mild and moderate lesions in the no cardiac care (NCC) group had better economic outcomes than those in the GCC and SC- groups, but post-hoc analysis revealed that they had a different patient profile than patients under cardiac care. Conclusion More specialized care levels are associated with better economic outcomes in patients with mild or moderate lesions in cardiac follow-up. Shared care with strong involvement of ACHD specialists might be a management option to consider. Characteristics of patients without cardiac follow-up but good medium-term economic prospects should be further scrutinized

Last year of life of adults with congenital heart diseases : causes of death and patterns of care

BACKGROUND. Although life expectancy in adults with congenital heart diseases (CHD) has increased dramatically over the past five decades, still a substantial number of patients dies prematurely. To gain understanding in the trajectories of dying in adults with CHD, the last year of life warrants further investigation. Therefore, our study aimed to (i) define the causes of death, and (ii) describe the patterns of healthcare utilisation in the last year of life of adults with CHD. METHODS AND RESULTS This retrospective mortality follow-back study used healthcare claims and clinical data from BELCODAC, which includes patients with CHD from Belgium. Healthcare utilisation comprises cardiovascular procedures, CHD physician contacts, general practitioner visits, hospitalisations, emergency department (ED) visits, intensive care unit (ICU) admissions, and specialist palliative care and was identified using nomenclature codes. Of the 390 included patients, almost half of the study population (45%) died from a cardiovascular cause. In the last year of life, 87% of patients were hospitalised, 78% of patients had an ED visit, and 19% of patients had an ICU admission. Specialist palliative care was provided to 17% of patients, and to only 4% when looking at the patients with cardiovascular causes of death. CONCLUSIONS There is a high use of intensive and potentially avoidable care at the end of life. This may imply that end-of-life care provision can be improved. Future studies should further examine end-of-life care provision in the light of patient’s needs and preferences, and how the healthcare system can adequately respond

Last year of life of adults with congenital heart diseases : causes of death and patterns of care

BACKGROUND. Although life expectancy in adults with congenital heart diseases (CHD) has increased dramatically over the past five decades, still a substantial number of patients dies prematurely. To gain understanding in the trajectories of dying in adults with CHD, the last year of life warrants further investigation. Therefore, our study aimed to (i) define the causes of death, and (ii) describe the patterns of healthcare utilisation in the last year of life of adults with CHD. METHODS AND RESULTS This retrospective mortality follow-back study used healthcare claims and clinical data from BELCODAC, which includes patients with CHD from Belgium. Healthcare utilisation comprises cardiovascular procedures, CHD physician contacts, general practitioner visits, hospitalisations, emergency department (ED) visits, intensive care unit (ICU) admissions, and specialist palliative care and was identified using nomenclature codes. Of the 390 included patients, almost half of the study population (45%) died from a cardiovascular cause. In the last year of life, 87% of patients were hospitalised, 78% of patients had an ED visit, and 19% of patients had an ICU admission. Specialist palliative care was provided to 17% of patients, and to only 4% when looking at the patients with cardiovascular causes of death. CONCLUSIONS There is a high use of intensive and potentially avoidable care at the end of life. This may imply that end-of-life care provision can be improved. Future studies should further examine end-of-life care provision in the light of patient’s needs and preferences, and how the healthcare system can adequately respond

Evaluation of a nurse-led multi-component transition program for adolescents with congenital heart disease

Abstract Objective To evaluate the effectiveness of the transition program for adolescents with congenital heart disease (CHD) ‘Transition With a Heart’ (TWAH) on disease-related knowledge, quality of life (QoL), transition experiences, and gaps in follow-up. Methods A study with pre-posttest and control group (post-test) using consecutive sampling, including adolescents with moderate to severely complex CHD, without intellectual disability, aged≥ 12 y, and parents. After weighting, t-tests were performed. A multivariable regression analysis explored the outcomes’ determinants. Results In the intervention group, 28 adolescents and 25 parents were included, and 53 adolescents and 18 parents as controls. Adolescents’ knowledge significantly increased after completing TWAH (from 59.8% to 75.7%;p < 0.01). Their knowledge was positively correlated with TWAH (β = +13.3;p < 0.01). Adolescents’ transition experiences were also positively related to TWAH (general experience: β = +5.5;p < 0.01; transfer satisfaction: β = +0.8; p < 0.01). Adolescents’ QoL was mainly determined by CHD complexity and not by TWAH. No one showed gaps in follow-up. TWAH was not associated with parents’ transition experiences. Conclusion Implementing TWAH substantially improved adolescents’ disease-related knowledge and transition experiences. Practice implications The results regarding transition experiences need to be confirmed by further research. The TWAH design with the person-tailored educational program, skills training, and the transition coordinator can be used in settings with other chronic diseases

Influenza vaccination in congenital heart disease in the pre-COVID19 era : coverage rate, patient characteristics and outcome

Background Influenza vaccination is the most commonly recommended immune prevention strategy. However, data on influenza vaccination in patients with congenital heart disease (CHD) is scarce. In this study, our goals were to (i) measure vaccination coverage rates (VCR) for influenza in a large cohort of children, adolescents and adults with CHD, (ii) identity patient characteristics as predictors for vaccination, and (iii) investigate the impact of influenza vaccination on hospitalization. Methods A nationwide cohort study in Belgium included 16,778 patients, representing 134,782 vaccination years, from the BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC). Data over 9 vaccination years (2006-2015) were used, and patients were stratified into five age cohorts: 6 months-4 years; 5-17 years; 18-49 years; 50-64 years; and ≥65 years. Results In the respective age cohorts, the VCR was estimated to be 6.6%, 8.0%, 23.9%, 46.6%, and 72.8%. There was a steep increase in VCR as of the age of 40 years. Multivariable logistic regression showed that higher anatomical complexity of CHD, older age, presence of genetic syndromes, and prior cardiac interventions were associated with significantly higher VCRs. Among adults, men had lower and pregnant women had higher VCRs. The association between influenza vaccination and all-cause hospitalization was not significant in this study. Conclusion The influenza VCR in people with CHD is low, especially in children and adolescents. Older patients, particularly those with complex CHD, are well covered. Our findings should inform vaccination promotion strategies in populations with CHD

L’expérimental en sciences, réel ou virtuel

Le rôle des activités pratiques dans l’apprentissage des sciences a été largement étudié durant ces dernières décennies dans de nombreux pays. Récemment, le contexte institutionnel a évolué. En effet, dans l’enseignement primaire et secondaire en Europe, la démarche d’investigation (DI) est généralisée dans les instructions officielles. Les recherches menées à l'échelle internationale, font ressortir des questions spécifiques, portant par exemple sur l’articulation entre DI et démarche expérimentale. Dans le même temps, les évolutions technologiques modifient les pratiques expérimentales des scientifiques, les expérimentations peuvent être virtuelles, les manipulations peuvent être assistées par le numérique. À la suite de ces évolutions récentes il parait pertinent de s’interroger sur les problématiques actuelles de recherche en didactique des sciences liées à l’expérimental. Les contributions qui composent ce dossier thématique traitent des nouvelles formes que peut prendre le référent empirique et du rôle qu’il peut tenir dans l’apprentissage des sciences. Certaines étudient l’appropriation de la démarche expérimentale par les élèves dans l’enseignement primaire et secondaire. Le statut épistémologique de l’expérience dans l’enseignement des sciences et son influence sur l’action des enseignants constituent également un aspect important de ce numéro. Studies focusing on labwork role were deeply explored during these last decades in several countries in Europe. Recently, the institutional context evolved. In fact, inquiry based science education (IBSE) was generalized in primary and secondary schools in Europe. In the same time, new technological possibilities appear that modify scientists experimental practices, with virtual experimentations and numerical assisted manipulations. Due to these recent evolutions it is relevant to think about actual and new problematics in science education related to experimental approach. International studies in science education are specifically focused on articulation between IBSE and experimental approach. The proposals included in this theme issue address the possible forms of empirical referent and the role of practical activities in science education learning. Another point study is the appropriation of the experimental approach by the students. Then the epistemological statute of the experiment in science teaching and its influence on teachers’ action is also an important aspect of this issue