Knowledge Of Congenital Heart Disease Research Articles

Genetics and etiology of congenital heart disease.

Congenital heart disease (CHD) is the most common severe birth anomaly, affecting almost 1% of infants. Most CHD is genetic, but only 40% of patients have an identifiable genetic risk factor for CHD. Chromosomal variation contributes significantly to CHD but is not readily amenable to biological follow-up due to the number of affected genes and lack of evolutionary synteny. The first CHD genes were implicated in extended families with syndromic CHD based on the segregation of risk alleles in affected family members. These have been complemented by more CHD gene discoveries in large-scale cohort studies. However, fewer than half of the 440 estimated human CHD risk genes have been identified, and the molecular mechanisms underlying CHD genetics remains incompletely understood. Therefore, model organisms and cell-based models are essential tools for improving our understanding of cardiac development and CHD genetic risk. Recent advances in genome editing, cell-specific genetic manipulation of model organisms, and differentiation of human induced pluripotent stem cells have recently enabled the characterization of developmental stages. In this chapter, we will summarize the latest studies in CHD genetics and the strengths of various study methodologies. We identify opportunities for future work that will continue to further CHD knowledge and ultimately enable better diagnosis, prognosis, treatment, and prevention of CHD.

Hope is No Plan: Uncovering Actively Missing Transition-Aged Youth with Congenital Heart Disease.

Studies describing gaps in care for youth with congenital heart disease (CHD), focus on those who have returned to care, but rarely those actively missing from care. Our objective was to determine barriers for young adults with CHD actively missing from cardiac care and to re-engage them in care. Retrospective single-center cohort study of cardiology clinic patients ages 15–21 years with CHD between 2012 and 2019 for patients actively missing from care (≥ 12 months beyond requested clinic follow-up). We conducted prospective interviews, offered clinic scheduling information, and recorded cardiac follow-up. Data analyzed using descriptive statistics, univariable, and multivariable logistic regression. Of 1053 CHD patients, 33% (n = 349) were actively missing. Of those missing, 58% were male and median age was 17 years (IQR 16–19). Forty-six percent were Non-Hispanic White, 33% Hispanic, and 9% Black. Moderately complex CHD was in 71%, and 62% had private insurance. Patients with simple CHD, older age at last encounter (18–21), and scheduled follow-up > 12 months from last encounter were more likely to be actively missing. Interviews were completed by 125 patients/parents (36%). Lack of cardiac care was reported in 52%, and common barriers included: insurance (33%), appointment scheduling (26%), and unknown ACHD center care (15%). Roughly half (55%) accepted appointment information, yet only 3% successfully returned. Many patients require assistance beyond CHD knowledge to maintain and re-engage in care. Future interventions should include scheduling assistance, focused insurance maintenance, understanding where to obtain ACHD care, and educating on need for lifelong care.

Maternal knowledge of the child’s heart defect over a 1-year time span, its development and associated factors

Mothers are the link between patients, physicians, and other caregivers. Therefore, they should be well informed about the child's heart defect and accompanying issues. This study aimed to assess the mothers' understanding of their child's heart defect at hospitalisation and one year later and to analyse the individual development and associated factors. Mothers of children with CHD (aged ≤2years) were interviewed at time of hospitalisation and after one year. Development was calculated using the Wilcoxon signed-rank test. Knowledge was assessed using the Hannover Inventory of Parental Knowledge of Congenital Heart Disease that consists of eight subscales. Associated factors were self-assessed knowledge at hospitalisation, educational level, cardiac diagnosis, self-assessed severity of CHD, and source of information at follow-up. Mothers showed mixed understanding at hospitalisation, but their knowledge improved over a 1-year time span. This was especially true for the subscales "management of CHD" and "surveillance of deterioration", which resulted in an overall good knowledge at follow-up, whereas knowledge on infective endocarditis was still poor. Mothers with lowest and highest education had the most notable improvements. The same holds for caregivers with children with more severe CHD and who rated their knowledge as less than good. Overall, mothers showed significant improvement especially for topics that are important to provide adequate care, but still revealed knowledge gaps one year after hospitalisation. Consequently, clinicians should evaluate the individual knowledge level at all times and inform mothers accordingly.

Transition Preparation for Young Adolescents with Congenital Heart Disease: A Clinical Trial

To evaluate the impact of a novel nurse-led transition intervention program designed for young adolescents (age 13-14years) with congenital heart disease (CHD). We hypothesized that the intervention would result in improved self-management skills and CHD knowledge. Single-center cluster randomized controlled trial of a nurse-led transition intervention vs usual care. The intervention group received a 1-hour individualized session with a cardiology nurse, focusing on CHD education and self-management. The primary end point was change in TRANSITION-Q (transition readiness) score between baseline and 6months. The secondary end point was change in MyHeart score (CHD knowledge). We randomized 60 participants to intervention (n=30) or usual care (n=30). TRANSITION-Q score (range 0-100) increased from 49±10 at baseline to 54±9.0 at 6months (intervention) vs 47±14 to 44±14 (usual care). Adjusted for baseline score, TRANSITION-Q scores at 1 and 6months were greater in the intervention group (mean difference 5.9, 95% CI 1.3-10.5, P=.01). MyHeart score (range 0-100) increased from 48±24 at baseline to 71±16 at 6months (intervention) vs 54±24 to 57±22 (usual care). Adjusted for baseline score, MyHeart scores at 1 and 6months were greater in the intervention group (mean difference 19, 95% CI 12-26, P<.0001). Participants aged 14years had a greater increase in TRANSITION-Q score at 6months compared with 13-year-old participants (P<.05). A nurse-led program improved transition readiness and CHD knowledge among young adolescents. This simple intervention can be readily adopted in other healthcare settings. ClinicalTrials.gov: NCT02374892.

Qualitative study of facilitators and barriers for continued follow-up care as perceived and experienced by young people with congenital heart disease in Sweden

In-depth understanding of factors perceived by young people with congenital heart disease (CHD) to affect continued follow-up care is needed to tailor preventive strategies for discontinuation of follow-up care. To...

Application of 3D printing technology combined with PBL teaching model in teaching clinical nursing in congenital heart surgery: A case-control study.

We aimed to explore the application of three-dimensional (3D) printing technology with problem-based learning (PBL) teaching model in clinical nursing education of congenital heart surgery, and to further improve the teaching quality of clinical nursing in congenital heart surgery. In this study, a total of 132 trainees of clinical nursing in congenital heart surgery from a grade-A tertiary hospital in 2019 were selected and randomly divided into 3D printing group or traditional group. The 3D printing group was taught with 3D printed heart models combined with PBL teaching technique, while the traditional group used conventional teaching aids combined with PBL technique for teaching. After the teaching process, the 2 groups of nursing students were assessed and surveyed separately to evaluate the results. Compared to the traditional group, the theoretical scores, clinical nursing thinking ability, self-evaluation for comprehensive ability, and teaching satisfaction from the questionnaires filled by the 3D printing group were all higher than the traditional group. The difference was found to be statistically significant (P < .05). Our study has shown the 3D printing technology combined with the PBL teaching technique in the clinical nursing teaching of congenital heart surgery achieved good results.

Abstract 15423: Hope is Not a Plan: Re-engaging Transition-aged Young Adults With Congenital Heart Disease Actively Missing From Cardiac Care

Introduction: Many studies describe gaps in care for youth with congenital heart disease (CHD), but few reach out to patients actively missing from care. Our study goal was to identify young adults with CHD actively missing from cardiac care to: 1) administer a needs assessment and 2) re-engage patients in cardiac care. Methods: We performed a retrospective review of outpatient medical records (2012-2019) for patients 15-21 yrs with CHD at Texas Children’s Hospital. ICD 9/10 codes identified CHD patients; those ≥1 year beyond requested clinic follow-up were defined as ‘actively missing’. Sociodemographic data was collected, and a telephone needs assessment conducted to determine CHD knowledge, barriers to care, and health status. Either a patient or parent completed the survey and was offered to re-engage in cardiac care. Descriptive statistics were performed on available data. Results: Of 1057 CHD patients, 33% (n=353) were actively missing. Of those missing, 58% were male and median age was 17 yrs (IQR 16-19). Patients were 46% Non-Hispanic White, 9% Non-Hispanic Black, and 33% Hispanic. Moderately complex CHD was noted in 71%. Insurance status was 63% private and 31% public. Ninety-eight patients/parents (28%) participated in our survey. Fifty-two percent reported having no cardiac care, often citing lack of or incompatible hospital insurance (33%; n = 32). Active cardiac symptoms were reported in 25%. Half of patients felt they could explain their cardiac condition well, and 82% could name their medications. Scheduling barriers (26%; n = 25) and being unaware adults could be cared for at our heart center (15%; n = 15) were the most common obstacles to re-engaging in care. Participants felt text messaging and scheduling visits during cardiology clinic would improve care access. More than half of patients/parents (55%) accepted our help to re-engage in cardiac care (scheduling assistance). Conclusions: This data suggests patients require assistance beyond CHD knowledge to stay in care. Problems with insurance, scheduling, and perceptions of adult CHD care were key barriers to maintaining cardiac care despite moderate CHD complexity and active symptoms. Future quality initiatives should include scheduling, insurance coverage, and adult CHD services.

29. USING VIRTUAL REALITY HEART MODELS TO TEACH CONGENITAL HEART DISEASE TO TRAINEES

Introduction Congenital heart disease (CHD) is the most common human birth defect. Atrial and ventricular septal defects (ASDs and VSDs) account for >30% of CHD. Three-dimensional (3D) Virtual Reality (VR) heart models convey more spatial information than standard 2D drawings and may enhance a learners understanding of these CHD lesions. We hypothesized that using an innovative approach to teaching CHD anatomy and physiology, supplementing traditional didactic teaching with simulation of ASDs and VSDs in an interactive VR heart model, is both feasible and beneficial to the learner's comprehension and retention of CHD knowledge. Methods This was a prospective, blinded randomized-controlled, crossover study. Pediatric residents were assigned to two groups and completed knowledge tests before and after the teaching sessions. Each group received one-on-one teaching for the 2 CHD lesions: one with VR (interventional session) and one didactic only (control session). Group A received VR teaching for ASDs and lecture only for VSDs, while group B had the opposite. VR sessions incorporated a lecture during guided use of interactive VR heart model using the Oculus Rift TM. Control sessions entailed a didactic lecture supplemented by 2D drawings of the lesion. Residents completed demographic surveys indicating year of training, previous cardiology exposure, and Likert style learner satisfaction questionnaires to evaluate their experience with the VR intervention. To assess retention, the knowledge test was repeated 3-6 months following the study. Analysis of the average percentage correct and average change in percentage correct between the pre-test, post-test, and delayed post-test was performed across the control and intervention groups to assess the efficacy of VR vs. traditional didactic education. We used the non-parametric 2-tailed Student's t-test to assess for statistical difference across groups. Results Of the 20 pediatric residents who participated in the study, 70% were interns. 15% had completed a cardiology rotation during medical school and 30% had completed a cardiology rotation during residency. Average pre-intervention scores were 22 +/- 17% and 31 +/- 8% for the control and VR groups respectively (p=0.38). Average post-intervention scores rose significantly across groups (p = 2.2 × 10-8) but were similar comparing control and VR exposures (83+/-17% and 93+/-8% respectively; p=0.23). Retention test scores were also similar across exposures: 67+/-11% and 57+/-21%, respectively (p=0.27). All residents rated the overall quality of using VR to educate pediatric residents about CHD as excellent. Residents were more likely to feel “very confident” after VR based sessions. Residents also described VR as an engaging educational experience that increased their ability to visualize and describe CHD lesions. Conclusions Using VR is an engaging and effective way to teach residents about CHD and results in knowledge acquisition and retention similar to traditional didactic teaching methods. Future studies with larger number of participants are needed to further explore the use of VR.

Patient empowerment and its correlates in young persons with congenital heart disease.

The objective of this study was to measure the level of empowerment and identify its correlates in young persons with congenital heart disease. Patients aged 14-18 years with congenital heart disease, and under active follow-up in one of four paediatric cardiology centres in Sweden were invited to participate in a cross-sectional study. A total of 202 young persons returned the questionnaires. Patient empowerment was measured with the Gothenburg Young Persons Empowerment Scale that allows the calculation of total and subscale scores. Univariate and multivariate linear regression analyses were undertaken to analyse possible correlates, including: sex, age, health behaviours, knowledge of congenital heart disease, quality of life, patient-reported health, congenital heart disease complexity, transition readiness and illness perception. The mean empowerment score was 54.6±10.6 (scale of 15-75). Univariate analyses showed that empowerment was associated with age, quality of life, transition readiness, illness perception, health behaviours and patient-reported health (perceived physical appearance, treatment anxiety, cognitive problems and communication issues). However, multivariable linear regression analyses identified that only transition readiness (β=0.28, P<0.001) and communication (β=0.36, P<0.001) had a positive association with patient empowerment. These variables were also significantly associated with the subscale scores of the empowerment scale of knowledge and understanding ( P<0.001), shared decision-making ( P<0.001) and enabling others ( P<0.01). The overall models' explained variance ranged from 8% to 37%. Patient empowerment was associated with transition readiness and fewer problems communicating. While it is not possible to establish the directionality of the associations, interventions looking to increase empowerment could benefit from using these variables (or measurements) for evaluation purposes.

Transition Intervention for Adolescents With Congenital Heart Disease

BackgroundThere is little evidence regarding the efficacy of interventions to prepare adolescents with congenital heart disease (CHD) to enter adult care. ObjectivesThe goal of this study was to evaluate the impact of a nurse-led transition intervention on lapses between pediatric and adult care. MethodsA cluster randomized clinical trial was conducted of a nurse-led transition intervention for 16- to 17-year-olds with moderate or complex CHD versus usual care. The intervention group received two 1-h individualized sessions targeting CHD education and self-management skills. The primary outcome was excess time to adult CHD care, defined as the interval between the final pediatric and first adult cardiology appointments, minus the recommended time interval, analyzed by using Cox proportional hazards regression accounting for clustering. Secondary outcomes included scores on the MyHeart CHD knowledge survey and the Transition Readiness Assessment Questionnaire. ResultsA total of 121 participants were randomized to receive the intervention (n = 58) or usual care (n = 63). At the recommended time of first adult appointment (excess time = 0), intervention participants were 1.8 times more likely to have their appointment within 1 month (95% confidence interval: 1.1 to 2.9; Cox regression, p = 0.018). This hazard increased with time; at an excess time of 6 months, intervention participants were 3.0 times more likely to have an appointment within 1 month (95% confidence interval: 1.1 to 8.3). The intervention group had higher scores at 1, 6, 12, and 18 months on the MyHeart knowledge survey (mixed models, p < 0.001) and the Transition Readiness Assessment Questionnaire self-management index (mixed models, p = 0.032). ConclusionsA nurse-led intervention reduced the likelihood of a delay in adult CHD care and improved CHD knowledge and self-management skills. (Congenital Heart Adolescents Participating in Transition Evaluation Research [CHAPTER 2]; NCT01723332)

Piloting the Use of Patient-Specific Cardiac Models as a Novel Tool to Facilitate Communication During Cinical Consultations.

This pilot study aimed to assess the impact of using patient-specific three-dimensional (3D) models of congenital heart disease (CHD) during consultations with adolescent patients. Adolescent CHD patients (n = 20, age 15–18 years, 15 male) were asked to complete two questionnaires during a cardiology transition clinic at a specialist centre. The first questionnaire was completed just before routine consultation with the cardiologist, the second just after the consultation. During the consultation, each patient was presented with a 3D full heart model realised from their medical imaging data. The model was used by the cardiologist to point to main features of the CHD. Outcome measures included rating of health status, confidence in explaining their condition to others, name and features of their CHD (as a surrogate for CHD knowledge), impact of CHD on their lifestyle, satisfaction with previous/current visits, positive/negative features of the 3D model, and open-ended feedback. Significant improvements were registered in confidence in explaining their condition to others (p = 0.008), knowledge of CHD (p < 0.001) and patients’ satisfaction (p = 0.005). Descriptions of CHD and impact on lifestyle were more eloquent after seeing a 3D model. The majority of participants reported that models helped their understanding and improved their visit, with a non-negligible 30% of participants indicating that the model made them feel more anxious about their condition. Content analysis of open-ended feedback revealed an overall positive attitude of the participants toward 3D models. Clinical translation of 3D models of CHD for communication purposes warrants further exploration in larger studies.

A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study.

BackgroundThe population of adolescents and young adults with congenital heart disease (CHD) is growing exponentially. These survivors are at risk of late cardiac complications and require lifelong cardiology care. However, there is a paucity of data on how to prepare adolescents to assume responsibility for their health and function within the adult health care system. Evidence-based transition strategies are required.MethodsThe Congenital Heart Adolescents Participating in Transition Evaluation Research (CHAPTER 2) Study is a two-site cluster randomized clinical trial designed to evaluate the efficacy of a nurse-led transition intervention for 16–17 year olds with moderate or complex CHD. The primary endpoint is excess time to adult CHD care, defined as the time interval between the final pediatric cardiology appointment and the first adult CHD appointment, minus the recommended time interval between these appointments. Secondary endpoints include the MyHeart score (CHD knowledge), Transition Readiness Assessment Questionnaire score, and need for catheter or surgical re-intervention. Participants are enrolled in clusters based on week of attendance in the pediatric cardiology clinic. The intervention consists of two one-hour individualized sessions between a cardiology nurse and study participant. Session One focuses on knowledge of the participant’s CHD, review of their cardiac anatomy and prior interventions, and potential late cardiac complications. Session Two focuses on self-management and communication skills through review and discussion of videos and role-play. The study will recruit 120 participants.DiscussionMany adolescents and young adults experience a gap in care predisposing them to late cardiac complications. The CHAPTER 2 Study will investigate the impact of a nurse-led transition intervention among adolescents with CHD. Fidelity of the intervention is a major focus and priority. This study will build on our experience by (i) enrolling at two tertiary care programs, (ii) including a self-management intervention component, and (iii) evaluating the impact of the intervention on time to ACHD care, a clinically relevant outcome. The results of this study will inform pediatric cardiology programs, patients and policy makers in judging whether a structured intervention program provides clinically meaningful outcomes for adolescents and young adults living with CHD.Trial registrationClinicalTrials.gov ID NCT01723332

Abstract 18621: Self-care Confidence is Important in Self-care in Emerging Adults With Congenital Heart Disease

Background: Emerging adults (ages 18-25 years) with congenital heart disease (CHD) are expected to perform self-care, behaviors that maintain physiologic stability and the response to symptoms as they occur. In spite of the seriousness of CHD, some emerging adults forego self-care. Identifying those unlikely to perform self-care is essential.Objective: The purpose of this study was to describe self-care and to identify the correlates of self-care in emerging adults with CHD. We hypothesized that knowledge and beliefs would be the primary determinants of self-care. Methods: In this descriptive, cross-sectional study, we enrolled a convenience sample (n=57) of emerging adults from two outpatient CHD centers (adult, n=37; pediatric, n=20) in the Northeastern US. All participants completed neuropsychological testing (PMR, DSST, Trail-Making Tests and the Letter Number Sequencing Tests) and scales measuring developmental stage (Course of Life), mood, knowledge of CHD (Leuven Knowledge Questionnaire), self-efficacy (the NGSES), family functioning (FAD), and a demographic survey. Disease severity was determined by the diagnosis and the number of repairs. Variables were tested as correlates of self-care measured using the Self-Care in CHD Scale (SC-CHD). Scores are standardized 0-100; higher scores indicate higher self-care. Multivariate regression was conducted in two blocks. First age, disease severity, developmental stage, mood, family functioning, cognition, and self-care confidence were entered. Second, knowledge and beliefs were entered for hypothesis testing. Results: Participants (42% female, mean age 21 years, SD 2.32) had predominantly moderate (42%) to severely (45.6%) complex CHD. Self-care was low (SC-CHD=mean 57, SD 11.23). More CHD repairs, higher levels of self-care confidence, and older age explained 41% of the variance in self-care (Block 2: F=3.785, df=3, 46, p=0.17). The higher the level of self-care confidence, the more likely the performance of self-care. Conclusions: These results can be used to identify a subset of CHD patients at risk for poor self-care. Self-care confidence is the only modifiable determinant, suggesting that interventions designed to increase self-care confidence may be useful in this population.

Your Patient Has Congenital Heart Disease--What Questions Should You Ask to Provide High-Quality Care?

Congenital heart disease (CHD) is the most common birth defect. About two-thirds of those individuals living with CHD are now adults. If you do not have in-depth knowledge of CHD, knowing what questions to ask and what resources to use can improve patient outcomes and satisfaction with care.

Caregivers of Children with Congenital Heart Disease: Does Socioeconomic Class Have Any Effect on Their Perceptions?

Studies from other parts of the world have documented knowledge gaps in parents of children with congenital heart disease (CHD). The authors are not aware of any study in the Nigerian population assessing the effect of socioeconomic class on the perceptions of caregivers of children with CHD. The study aimed to evaluate the effect of socioeconomic class on the perceptions of caregivers of children with CHD. A descriptive and cross-sectional questionnaire survey was conducted in a tertiary pediatric cardiac center involving 300 caregivers of children with CHD, recruited at the outpatient clinic from April 2008 to March 2012. Age range of the respondents was 16 to 72 years with a mean of 34.7 ± 8.1 years. Forty percent (119) of the caregivers had not heard about CHD; those in the upper socioeconomic class had better awareness (P = .02). Ninety percent of all the respondents knew that the cause of CHD is unknown. Only seven of the respondents (2.3%) had a good knowledge of the indicators, while 9.6% had a fair knowledge, almost 60% of the respondent had a poor knowledge, and up to 30% had no knowledge of the pointers. Nearly one-fifth (19.3%) of the respondents were not aware of any treatment options for children with CHD. Only 12.7% of the respondents knew the best mode of treatment, and only 43% of the respondents believed CHD could be prevented. Further analysis revealed that there was no statistically significant difference between the various socioeconomic classes with regard to knowledge of the indicators of CHD, awareness of the best mode of treatment, and perception of preventability (P = .06, .74, and .13, respectively). More parents in the upper socioeconomic class had heard about CHD. However, most parents of children with CHD had poor knowledge of CHD, its indicators, its best mode of treatment, and its preventability, irrespective of their socioeconomic class. Our findings suggest an urgent need to develop an educational program to promote better understanding of CHD among caregivers.

Obstacles Encountered in Developing an Adult Congenital Heart Disease Program

More adults than children are now living in the United States with congenital heart disease (CHD). To accommodate the needs of this burgeoning population, there are an increasing number of centers providing care for adults with CHD. We sought to identify pertinent obstacles encountered in the development of a newly established adult CHD program. Asurvey regarding CHD knowledge, insurance, and cardiovascular counseling was provided to new clinic patients aged ≥18years. Crosstab correlations were performed to identify relations among categorical variables. Of 145 subjects (54% women; mean age 31 ± 11years), 84% had at least moderately complex CHD. Household income was <$40,000 for 51% of subjects. There were a significantly greater number of adults, aged 30 to 54years, with public insurance compared with the national average (p= 0.005). Of 83% of subjects reporting CHD knowledge, 71% correctly identified their defect. Self-reported CHD knowledge correlated positively with higher education (p= 0.019), higher income (p= 0.036), health maintenance organization or preferred provider organization insurance (p= 0.01), and higher level of CHD complexity (p= 0.012); however, none of these factors significantly affected correct identification of one's CHD. In fact, patients with the most complex disease were the least likely to correctly identify their defects. In general, cardiovascular and sexual health screening was lacking. In conclusion, adult patients with CHD require robust ancillary services and special attention to lifelong insurance and counseling. Implementation of a health-care strategy to identify patients' needs can help to overcome socioeconomic obstacles and contribute to the success of the newly established adult CHD program.

Geriatric congenital heart disease: a new challenge in the care of adults with congenital heart disease?

This editorial refers to ‘Congenital heart disease beyond the age of 60: emergence of a new population with high resource utilization, high morbidity, and high mortality’[†][1], by O. Turatel et al. , on page 725 and ‘Recommendations for organization of care for adults with congenital heart disease and for training in the subspecialty of ‘Grown-up Congenital Heart Disease’ in Europe: a position paper of the Working Group on Grown-up Congenital Heart Disease of the European Society of Cardiology’[‡][2], by H. Baumgartner et al ., on page 686 The major advances in paediatric heart surgery and paediatric cardiology over recent decades resulted in a markedly increasing number of patients with congenital heart disease who survive into adulthood.1,2 While 90% of patients with complex disease died during childhood when born in the 1950s, the majority already survived beyond 18 years when born in the 1980s.3,4 Thus, we are faced now with a new population of grown-ups with congenital heart disease (CHD) who need very special care.1,2 Although the number of adults with CHD currently living in the European Union must be estimated at around 1 million patients, they nevertheless represent only a minority within the population of adults with cardiovascular disease4 considering that ∼24 million may, for example, suffer from coronary artery disease as one of the major players.5 Thus, CHD is rarely seen in the non-specialized clinical practice of cardiology. In addition, the diversity of CHD and the resulting clinical problems are immense.1 Although knowledge of adult CHD (ACHD) has grown in recent years, the spectrum of disease and late complications are constantly changing due to the development of improved surgical techniques over the years. A typical example is transposition of the great arteries. In the current population of adults, … [1]: #fn-2 [2]: #fn-3

Maternal Understanding of Infective Endocarditis After Hospitalization: Assessing the Knowledge of Mothers of Children with Congenital Heart Disease and the Practical Implications

This study aimed to examine the knowledge of mothers of children with congenital heart disease as well as the association of cardiological factors and maternal characteristics with maternal understanding. Mothers of 135 children (≤2years old) were interviewed to assess maternal knowledge of infective endocarditis (IE) using the Hannover Inventory of Parental Knowledge of Congenital Heart Disease. Two subscales, endocarditis and risk factors, were used. Cardiological data as well as maternal characteristics were collected. Two-thirds of the mothers achieved only low scores, answering 0-20% of the questions correctly (endocarditis=64.4%; risk factors=71.1%). Mothers with higher education recalled the correct definition of IE (P=0.001) and the importance of dental hygiene (P=0.004) more often. Mothers with only one child were more likely to know the most typical symptom (P=0.007). The severity of the heart disease and the requirement of endocarditis prophylaxis did not influence maternal understanding. Yet, mothers assessing the heart disease as severe showed better knowledge (typical symptom P=0.021; importance of dental hygiene P=0.007). If mothers learned the diagnosis before their child's birth, they remembered relevant information more often. Mothers receiving information by the medical staff and from the Internet showed better knowledge (definition P=0.014; importance of dental hygiene P=0.001). Due to low levels of knowledge, more efforts must be put into the education of mothers. Educational programs should take maternal characteristics into account, providing written material and thereby keeping the instruction of lower-educated persons in mind. Furthermore, education should be focused on mothers of children requiring IE prophylaxis.

Knowledge of Congenital Heart Disease of Mothers: Presentation of a Standardized Questionnaire and First Results

The "Hannover Inventory of Parental Knowledge of Congenital Heart Disease," a questionnaire for the assessment of knowledge about congenital heart disease (CHD) for use in parents, is presented, and the first results are reported. It consists of eight subscales covering general knowledge of cardiac functioning, signs and symptoms of the child's individual CHD before and after treatment, type of individual CHD and treatment, management of CHD, surveillance of deterioration, endocarditis, and physical activity. One hundred thirty-seven mothers completed the questionnaire immediately after their children underwent CHD surgery. The questionnaire has satisfactory psychometric properties. Knowledge on most dimensions was satisfactory, but it was rather poor with respect to important subscales as endocarditis and surveillance of deterioration. The questionnaire covers a range of relevant topics by taking the individual CHD into account. Parents have satisfactory knowledge of CHD in some areas, but knowledge about preventive behaviors turned out as rather poor. This needs to be improved in order to make parents capable to take their share of after-treatment care.

Adolescents' Understanding of Their Congenital Heart Disease on Transfer to Adult-Focused Care

Adolescents with congenital heart disease (CHD) must take responsibility for their life and care. This requires that they have sufficient knowledge about their heart disease, treatment, and preventive measures. Thus, CHD-related education should be directed to adolescents. Research on adolescents' understanding and knowledge of CHD is limited. It is unknown what adolescents with CHD know about their heart defect, treatment, and preventive measures necessary to avoid complications. We addressed these questions in a descriptive cross-sectional study of 91 adolescents with CHD (53% males; median age 17 years). In the present study, we assessed the subjects' knowledge of CHD using the Leuven Knowledge Questionnaire for Congenital Heart Disease. The results showed that the patients had adequate knowledge (>80% correct answers) about the need for regular follow-up, their required diet, past treatment, and dental practices. They had moderate knowledge (50% to 80% correct answers) about the frequency of follow-up, occupational choices, medication regimen, and sexual activities. However, the patients had poor knowledge (<50% correct answers) of the name of their heart defect; the reasons for follow-up; the effects of competitive sports; the symptoms that reflect deterioration of their heart disease; the definition, characteristics, and risk factors of endocarditis; the possibility of recurrent episodes of endocarditis during their lifetime; the effect of smoking and alcohol on their heart disease; the hereditary nature of their condition; the suitability of intrauterine devices as contraceptives; the appropriateness of oral contraceptives; and the risks of pregnancy. In conclusion, the results of the present study have showed that the level of knowledge of adolescents with CHD has significant gaps.