scholarly journals What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education

Heart ◽  
2001 ◽  
Vol 86 (1) ◽  
pp. 74-80
Author(s):  
P Moons ◽  
E De Volder ◽  
W Budts ◽  
S De Geest ◽  
J Elen ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Diseases ◽  
Adult Congenital Heart Disease ◽  
Tertiary Care ◽  
Educational Interventions ◽  
Heart Defect ◽  
The Impact

OBJECTIVETo assess how much adults with congenital heart disease understand about their heart defect, its treatment, and the preventive measures necessary to avoid complications.DESIGNDescriptive, cross sectional study.SETTINGAdult congenital heart disease programme in one tertiary care centre in Belgium.PATIENTS62 adults with congenital heart disease (47 men; 15 women), median age 23 years.MAIN OUTCOME MEASURESPatients' knowledge was assessed during an outpatient visit using the Leuven knowledge questionnaire for congenital heart diseases, a 33 item instrument developed for this study.RESULTSPatients had adequate knowledge (> 80% correct answers) about their treatment, frequency of follow up, dental practices, occupational choices, appropriateness of oral contraceptives, and the risks of pregnancy. Knowledge about the name and anatomy of the heart defect, the possibility of recurrent episodes of endocarditis during their lifetime, and the appropriateness of different physical activities was moderate (50–80% correct answers). There was poor understanding (< 50% correct answers) about the reasons for follow up, the symptoms of deterioration of the heart disease, the definition, characteristics, and risk factors of endocarditis, the impact of smoking and alcohol on the heart disease, the hereditary nature of the condition, and the suitability of intrauterine devices as contraceptives.CONCLUSIONSAdults with congenital heart disease have important gaps in their knowledge about their condition. The results of this study can be used as a basis for developing or optimising structured educational interventions to enhance patients' health behaviour.

scholarly journals Cyanotic congenital heart disease: Impact on growth and endocrine functions.

2021 ◽  
Vol 28 (10) ◽  
pp. 1477-1483
Author(s):  
Muhammad Sohail Arshad ◽  
Waqas Imran Khan ◽  
Arif Zulqarnain ◽  
Hafiz Muhammad Anwar-ul-Haq ◽  
Mudasser Adnan
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Pulmonary Stenosis ◽  
Tertiary Care ◽  
Cyanotic Congenital Heart Disease ◽  
P Value ◽  
Common Diagnosis ◽  
Significant Difference ◽  
The Impact

Objective: To find out the impact of Cyanotic Congenital Heart Disease (CCHD) on growth and endocrine functions at a tertiary care child healthcare facility of South Punjab. Study Design: Case Control study. Setting: Department of Pediatric Cardiology and Department of Pediatric Endocrinology, Institute of Child’s Health (ICH), Multan, Pakistan. Period: December 2018 to March 2020. Material & Methods: During the study period, a total of 53 cases of Echocardiography confirmed CCHD were registered. Along with 53 cases, 50 controls during the study period were also enrolled. Height, weight, body mass index (BMI) along with hormonal and biochemical laboratory investigations were done. Results: There was no significant difference between gender and age among cases and controls (p value>0.05). Most common diagnosis of CCHD among cases, 24 (45.3%) were Tetralogy of Fallot (TOF) followed by 9 (17.0%) transposition of the great arteries (TGA) with Ventricular Septal Defect (VSD) with Pulmonary Stenosis (PS). Mean weight of CCHD cases was significantly lower in comparison to controls (21.19+6.24 kg vs. 26.48+8.1 kg, p value=0.0003). Blood glucose was significantly lower among cases in comparison to controls (77.58+14.58 mg/dl vs. 87.25+11.82 mg/dl, p value=0.0004). No significant difference was found in between cases and controls in terms of various hormone levels studied (p value>0.05) except Insulin-like Growth Factor-1 (IGF-1) levels (p value<0.0001). Conclusion: Children with cyanotic congenital heart disease seem to have negative effects on nutrition and growth. Change in pituitary-adrenal axis is suspected while pituitary-thyroid axis seemed to be working fine among CCHD cases. Serum glucose and IGF-1 levels were significantly decreased among CCHD cases.

Abstract 19314: Impact of Body Mass Index on Clinical Outcomes in Complex Adult Congenital Heart Disease

Circulation ◽  
2014 ◽  
Vol 130 (suppl_2) ◽  
Author(s):  
Norihisa Toh ◽  
Ines Uribe Morales ◽  
Zakariya Albinmousa ◽  
Tariq Saifullah ◽  
Rachael Hatton ◽  
...  
Keyword(s):  
Heart Failure ◽  
Body Mass Index ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Adult Congenital Heart Disease ◽  
Cardiac Events ◽  
Increased Risk ◽  
Adult Congenital

Background: Obesity can adversely affect most organ systems and increases the risk of comorbidities likely to be of consequence for patients with complex adult congenital heart disease (ACHD). Conversely, several studies have demonstrated that low body mass index (BMI) is a risk factor for heart failure and adverse outcomes after cardiac surgery. However, there are currently no data regarding the impact of BMI in ACHD. Methods: We examined the charts of 87 randomly selected, complex ACHD patients whose first visit to our institution was at 18-22 years old. Patients were categorized according to BMI at initial visit: underweight (BMI < 18.5 kg/m 2 ), normal (BMI 18.5 - 24.9 kg/m 2 ), overweight/obese (BMI ≥ 25 kg/m 2 ). Events occurring during follow-up were recorded. Data was censured on 1/1/2014. Cardiac events were defined as a composite of cardiac death, heart transplantation or admission for heart failure. Results: The cohort included patients with the following diagnoses: tetralogy of Fallot n=31, Mustard n=28, Fontan n=17, ccTGA n=9 and aortic coarctation n=2. The median (IQR) duration of follow-up was 8.7 (4.2 - 1.8) years. See table for distribution and outcomes by BMI category. Cardiac events occurred in 17/87 patients. After adjustment for age, sex, and underlying disease, the underweight group had increased risk of cardiac events (HR=12.9, 95% CI: 2.8-61.5, p < 0.05). Kaplan-Meier curves demonstrate the poorer prognosis of underweight patients (Figure). Conclusions: Underweight was associated with increased risk of late cardiac events in ACHD patients. We were unable to demonstrate significant overweight/obesity impact.

What Does it Mean to Live with a Congenital Heart Disease? A Qualitative Study on the Lived Experiences of Adult Patients

2005 ◽  
Vol 4 (1) ◽  
pp. 3-10 ◽  
Author(s):  
Patricia Claessens ◽  
Philip Moons ◽  
Bernadette Dierckx de Casterlé ◽  
Nancy Cannaerts ◽  
Werner Budts ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Lived Experience ◽  
Lived Experiences ◽  
Congenital Heart ◽  
Adult Congenital Heart Disease ◽  
Medical Problems ◽  
Heart Defect ◽  
Psychosocial Concerns ◽  
Adult Congenital

Background: Adults with congenital heart disease constitute a relatively new and continuously growing patient population. In addition to medical problems, patients perceive specific psychosocial concerns that influence their lived experiences and quality of life. Aim: This study aimed to explore the lived experiences of adult congenital heart disease patients. Methods: Unstructured, in-depth interviews were performed with 12 patients, aged between 25 and 40 years and suffering from moderate or severe heart defect (tetralogy of Fallot, transposition of the great arteries). Interviews were tape recorded and transcribed verbatim. Data were analyzed using Grounded Theory procedures. Results: Feeling different was the central theme of the patients’ lived experience, as they are faced with physical limitations and visible signs due to the heart defect. The experienced discordance between their world and healthy individuals’ world implies that patients struggle constantly with themselves and with their environment to be accepted as normal. The feeling of being different was influenced by attitudes of the environment, health care, and patient's personality. Moreover, it determined the perceived impact of the disease on the patient's daily life. Conclusion: This study shows that normalisation is the most important process when dealing with patients suffering from a congenital heart disease.

7 Long-Term Follow-Up of ICD in Adult Congenital Heart Disease Patients: A Large Single Centre Experience

Heart ◽  
2014 ◽  
Vol 100 (Suppl 3) ◽  
pp. A3.2-A4 ◽  
Author(s):  
Sandhya Santharam ◽  
Maria Theodosiou ◽  
Sara Thorne ◽  
Paul Clift ◽  
Lucy Hudsmith ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Adult Congenital Heart Disease ◽  
Single Centre ◽  
Single Centre Experience ◽  
Long Term Follow Up ◽  
Adult Congenital

scholarly journals Implantable cardioverter defibrillators in adult congenital heart disease: long-term follow up of therapies, complications and clinical events

EP Europace ◽  
2021 ◽  
Vol 23 (Supplement_3) ◽  
Author(s):  
V Ferreira ◽  
M Cruz Coutinho ◽  
G Portugal ◽  
P Silva Cunha ◽  
B Valente ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Primary Prevention ◽  
Congenital Heart ◽  
Septal Defect ◽  
Long Term Outcomes ◽  
Icd Implantation ◽  
Heart Defect

Abstract Funding Acknowledgements Type of funding sources: None. Introduction Adults with congenital heart disease (ACHD) at increased risk for sudden cardiac death (SCD) often undergo implantable cardioverter defibrillator (ICD) implantation at young ages. Data evaluating the long-term outcomes of ICD in this population remain scarce. We aimed to characterize the population with ACHD and an ICD. Methods Consecutive ACHD submitted to an ICD implantation in a single tertiary center were evaluated. Data on baseline clinical features, heart defect, indication for ICD, type of device, ICD-related complication and therapies and mortality during follow-up were collected. Results A total of 34 patients (P) were evaluated. Median age at implant was 39.3 years (interquartile range [IQR] 29-5-53.6) and median left ventricular ejection fraction (LVEF) was 43.5% (IQR 28.0-53.3). The most common heart defect was tetralogy of Fallot (11P;32,3%), followed by dextro-transposition of the great arteries, ostium secundum atrial septal defect (ASD) and ventricular septal defect (Figure 1). All P were submitted to surgical correction (median age at surgery 12.5 years [IQR 3.0-29.1]). Sixteen P underwent ICD implantation for primary prevention of SCD, owing to complex cardiopathy and ventricular dysfunction, and 18P due to spontaneous ventricular tachyarrhythmias. The implantable devices were a single-chamber ICD in 55.9%, a double-chamber ICD in 17.6%, a subcutaneous ICD in 20.6% and a CRT-D in 5.9%. During a median follow-up of 4.5 years (IQR 2.1-8.8), 52.9% of the P received appropriate ICD therapies, corresponding to 37.5% and 66.7% of primary and secondary prevention P, respectively. Median time to first arrhythmic event was 25.3 months (IQR 13.7-52.9). Six P (17.6%) suffered ICD-related complications and 20.6% received inappropriate therapies due to supraventricular tachyarrhythmias. During follow-up, 8.8% were submitted to heart transplant and 29.4% died (Table 1).  ICD therapies were associated with a composite of death, cardiac transplantation and hospital admission (OR 5.0, 95% CI 1.0-24.3). Conclusion ACHD with ICD experience high rate of appropriate therapies, including those implanted for primary prevention. The long-term burden of ICD-related complications and inappropriate shocks underlines the need for careful risk stratification and close monitoring. The increased survival of this population justifies collecting data on long-term outcomes to improve its care. Abstract Figure.

scholarly journals Minute ventilation/carbon dioxide production in congenital heart disease

2021 ◽  
Vol 30 (161) ◽  
pp. 200178
Author(s):  
Alfred Hager
Keyword(s):  
Carbon Dioxide ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Diseases ◽  
Minute Ventilation ◽  
Pulmonary Stenosis ◽  
Cardiopulmonary Exercise Testing ◽  
Carbon Dioxide Production ◽  
The Impact

This review summarises various applications of how ventilatory equivalent (ventilatory efficiency or better still ventilatory inefficiency) and the minute ventilation (VʹE)/carbon dioxide production (VʹCO2) slope obtained from cardiopulmonary exercise testing (CPET) can be used in the diagnostic or prognostic workup of patients with congenital heart disease.The field of congenital heart disease comprises not only a very heterogeneous patient group with various heart diseases, but also various conditions in different stages of repair, as well as the different residuals seen in long-term follow-up. As such, various physiologic disarrangements must be considered in the analysis of increased VʹE/VʹCO2 slope from CPET in patients with congenital heart disease. In addition to congestive heart failure (CHF), cyanosis, unilateral pulmonary stenosis and pulmonary hypertension (PH) provide the background for this finding. The predictive value of increased VʹE/VʹCO2 slope on prognosis seems to be more important in conditions where circulatory failure is associated with failure of the systemic ventricle. In cyanotic patients, those with Fontan circulation, or those with substantial mortality from arrhythmia, the impact of VʹE/VʹCO2 on prognosis is not that important.

scholarly journals Primary and secondary aortopathy associated with adult congenital heart disease - retrospective study

2020 ◽  
Author(s):  
Ingrid Schusterova ◽  
Alzbeta Banovcinova ◽  
Marianna Vachalcova ◽  
Marta Jakubova ◽  
Panagiotis Artemiou
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Aortic Root ◽  
Congenital Heart ◽  
Adult Congenital Heart Disease ◽  
Ascending Aorta ◽  
Control Group ◽  
Adult Congenital ◽  
Aorta Dilatation

Abstract Background: Primary and secondary aortopathy are frequently encountered in patients with congenital heart disease. The aim of this study is to present our experience and the incidence of primary and secondary adult CHD-associated aortopathy.Methods. The cohort is comprised of adult patients with congenital heart disease from the registry of the Eastern Slovakia Institute of Cardiovascular Diseases. Data from the last follow-up examinations are included in this study. In the primary and secondary aortopathy group were 35 and 12 patients respectively. As a control group were selected 64 patients with non aortopathy associated congenital heart disease (atrial and ventricular septal defect).Results: Patients with primary and secondary aortopathy had larger ascending aorta/aortic root diameters than the control group (36.28 (26-49) mm vs 30.25 (21-41) mm p=0.000113, 33.82 27-49) mm vs 29.03 (19-38)mm p=0.000366 and 42.1 (30-50) mm vs 30.25 (21-41) mm, p=0.000106, 35.67 (27-48) mm vs 29.03 (19-38) mm, p=0.000119 respectively). Moreover, patients with secondary aortopathy had statistically significant larger ascending aorta diameter compared to the patients with primary aortopathy ( 42.1 (30-50) mm vs 36.28 ( 26-49) mm p=0.030). During the follow-up period, were performed only in 2 patients (one from each group) operations on the aortic root and the ascending aorta due to aortic root or ascending aorta dilatation.Conclusion: More patients with secondary aortopathy had dilated ascending aorta/ aortic root, as well as larger aortic diameters compare to the patients with primary aortopathy. Routine follow-up of these patients with attention to aortic diameter is necessary.

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