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

2021 ◽  
Author(s):  
Judson A. Moore ◽  
Shreya S. Sheth ◽  
Wilson W. Lam ◽  
Alexander J. Alexander ◽  
John C. Shabosky ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Private Insurance ◽  
Cardiac Care ◽  
Patients Âgés ◽  
Cardiology Clinic ◽  
Common Barriers ◽  
Hispanic White

Background and Objectives: 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. Methods: Retrospective single-center cohort study of cardiology clinic patients ages 15-21 years with CHD between 2012-2019 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 was analyzed using descriptive statistics, univariable, and multivariable logistic regression. Results: Of 1053 CHD patients, 33% (n=349) were actively missing. Of those missing, 58% were male and median age was 17 yrs (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. Conclusions: 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.

scholarly journals Double Inlet Left Ventricle with Eisenmenger Syndrome in an Adult – A Case Report

2017 ◽  
Vol 5 (1) ◽  
pp. 53-56
Author(s):  
Rahul Regi Abraham ◽  
Rahul Regi Abraham
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Left Ventricle ◽  
Congenital Heart ◽  
Pulmonary Stenosis ◽  
Eisenmenger Syndrome ◽  
Tertiary Center ◽  
History Of ◽  
Double Inlet Left Ventricle

Background: Patient diagnosed with double inlet left ventricle (prevalent in 5 – 10 in 100,000 newborns) complicated with Eisenmenger syndrome had a median survival age of 14 years without corrective surgery. Congenital heart disease such as this is usually treated by multiple surgeries during early childhood. A surgically uncorrected case in adults is not of common occurrence. Further, generalized itching after coming in contact with water (aquagenic pruritis) presented an interesting conundrum to treat. Case: A 29-year-old patient in India presented at a primary health care center with a history of difficulty breathing and discoloration of extremities since birth. He also gave a history of itching which commonly occurred after taking bath, hemoptysis and history of turning blue in color after birth. Patient had received no treatment besides regular phlebotomies. On examination, there was grade IV clubbing and conjunctival congestion. Cardiovascular examination revealed an enlarged heart, heaving apex beat and a pan-systolic murmur. A provisional diagnosis of a congenital cyanotic heart disease was made. Investigations revealed hemoglobin of 16.8g/dl. X–ray and electrocardiogram showed hypertrophy of the ventricles. An echocardiogram showed double inlet left ventricle with L-malposed vessels but without pulmonary stenosis. A final diagnosis of congenital heart disease; double inlet left ventricle, L-malposed vessels without pulmonary stenosis, Eisenmenger Syndrome and absolute erythrocytosis was made. Patient was advised for further management with a cardiologist in a tertiary center but the patient did not follow up. Conclusion: Unlike in high-income countries where most congenital heart diseases are detected and dealt with at birth whereas low-and middle-income nations often have to deal with cases that present much later and should often be included in the differential diagnosis. Inability to follow up cases, centers that are poorly equipped and lack of facilities for investigations, patient’s lack of medical awareness, and financial restrictions are major barriers to providing optimal treatment.

scholarly journals Discontinuity of Cardiac Follow‐Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta‐Analysis

2021 ◽  
Author(s):  
Philip Moons ◽  
Sandra Skogby ◽  
Ewa‐Lena Bratt ◽  
Liesl Zühlke ◽  
Ariane Marelli ◽  
...  
Keyword(s):  
United States ◽  
Systematic Review ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Defects ◽  
Meta Analysis ◽  
Transition Programs ◽  
The United States

Background The majority of people born with congenital heart disease require lifelong cardiac follow‐up. However, discontinuity of care is a recognized problem and appears to increase around the transition to adulthood. We performed a systematic review and meta‐analysis to estimate the proportion of adolescents and emerging adults with congenital heart disease discontinuing cardiac follow‐up. In pooled data, we investigated regional differences, disparities by disease complexity, and the impact of transition programs on the discontinuity of care. Methods and Results Searches were performed in PubMed, Embase, Cinahl, and Web of Science. We identified 17 studies, which enrolled 6847 patients. A random effects meta‐analysis of single proportions was performed according to the DerSimonian‐Laird method. Moderator effects were computed to explore sources for heterogeneity. Discontinuity proportions ranged from 3.6% to 62.7%, with a pooled estimated proportion of 26.1% (95% CI, 19.2%–34.6%). A trend toward more discontinuity was observed in simple heart defects (33.7%; 95% CI, 15.6%–58.3%), compared with moderate (25.7%; 95% CI, 15.2%–40.1%) or complex congenital heart disease (22.3%; 95% CI, 16.5%–29.4%) ( P =0.2372). Studies from the United States (34.0%; 95% CI, 24.3%–45.4%), Canada (25.7%; 95% CI, 17.0%–36.7%), and Europe (6.5%; 95% CI, 5.3%–7.9%) differed significantly ( P =0.0004). Transition programs were shown to have the potential to reduce discontinuity of care (12.7%; 95% CI, 2.8%–42.3%) compared with usual care (36.2%; 95% CI, 22.8%–52.2%) ( P =0.1119). Conclusions This meta‐analysis showed that there is a high proportion of discontinuity of care in young people with congenital heart disease. The highest discontinuity proportions were observed in studies from the United States and in patients with simple heart defects. It is suggested that transition programs have a protective effect. Registration URL: www.crd.york.ac.uk/prospero . Unique identifier: CRD42020182413.

scholarly journals Risk Factors Associated with Congenital Heart Disease in Patients Presenting to Aljalila Cardiology Clinic between January 2020- May 2020: A Case Control Study

2021 ◽  
pp. 1-6
Author(s):  
Samah Alasrawi ◽  
◽  
Hessa Almansoori ◽  
Keyword(s):  
Risk Factors ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Maternal Smoking ◽  
Congenital Heart ◽  
Case Control Study ◽  
Maternal Diabetes ◽  
Case Control ◽  
Cardiology Clinic ◽  
Control Study

Objective: To investigate the association of maternal diabetes, maternal smoking and syndromes with congenital heart disease (CHD) in patients attending Aljalila cardiology clinic between January 2020 and May of 2020. Methods: A case control study to assess the association of maternal diabetes, maternal smoking and syndromes with CHD. All patients that presented to the clinic between January 2020 and May of 2020 were included. An interviewer administered questionnaire was used to record the presence of maternal diabetes, maternal smoking, and the type of syndrome and type of CHD. Patients with CHD were included in the case group and patients who did not have CHD were in the control group. Age, gender, and nationality were also collected from the hospital records. Fisher exact test and logistic regression was used to analyze the results. Results: A total of 177 cases and 211 controls were recruited. All the risk factors increase the risk of CHD, with maternal diabetes (OR 6.3, 95% CI 2.7-14.6) having the strongest association, then syndromes (OR 5.1, 95% CI 2.3-11.3) and lastly maternal smoking (OR 4.0, 95% CI 1.0-16.3). The most common type of CHD is ventricular septal defect. Conclusion: Maternal diabetes, maternal smoking and syndromes are significant risk factors of CHD in children visiting Aljalila cardiology clinic. Action needs to be taken in order to decrease these risk factors and so, decrease the incidence of CHD in the future. Clearly, more research is needed in order to identify other risk factors for patients in the United Arab Emirates (UAE)

scholarly journals Long‐Term Outcome of Patients With Congenital Heart Disease Undergoing Cardiac Resynchronization Therapy

2021 ◽  
Author(s):  
Peter Kubuš ◽  
Jana Rubáčková Popelová ◽  
Jan Kovanda ◽  
Kamil Sedláček ◽  
Jan Janoušek
Keyword(s):  
New York ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Association ◽  
Cardiac Resynchronization ◽  
New York Heart Association ◽  
Crt Response

Background Cardiac resynchronization therapy (CRT) is rarely used in patients with congenital heart disease, and reported follow‐up is short. We sought to evaluate long‐term impact of CRT in a single‐center cohort of patients with congenital heart disease. Methods and Results Thirty‐two consecutive patients with structural congenital heart disease (N=30) or congenital atrioventricular block (N=2), aged median of 12.9 years at CRT with pacing capability device implantation, were followed up for a median of 8.7 years. CRT response was defined as an increase in systemic ventricular ejection fraction or fractional area of change by >10 units and improved or unchanged New York Heart Association class. Freedom from cardiovascular death, heart failure hospitalization, or new transplant listing was 92.6% and 83.2% at 5 and 10 years, respectively. Freedom from CRT complications, leading to surgical system revision (elective generator replacement excluded) or therapy termination, was 82.7% and 72.2% at 5 and 10 years, respectively. The overall probability of an uneventful therapy continuation was 76.3% and 58.8% at 5 and 10 years, respectively. There was a significant increase in ejection fraction/fractional area of change ( P <0.001) mainly attributable to patients with systemic left ventricle ( P =0.002) and decrease in systemic ventricular end‐diastolic dimensions ( P <0.05) after CRT. New York Heart Association functional class improved from a median 2.0 to 1.25 ( P <0.001). Long‐term CRT response was present in 54.8% of patients at last follow‐up and was more frequent in systemic left ventricle ( P <0.001). Conclusions CRT in patients with congenital heart disease was associated with acceptable survival and long‐term response in ≈50% of patients. Probability of an uneventful CRT continuation was modest.

Stent Implantation to Maintain Patency of a Stenosed Blalock Taussig Shunt

2005 ◽  
Vol 13 (3) ◽  
pp. 274-276 ◽  
Author(s):  
Amjad Kouatli ◽  
Jameel Al-Ata ◽  
M Omar Galal ◽  
Muhammed A Amin ◽  
Arif Hussain
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Oxygen Saturation ◽  
Stent Implantation ◽  
Congenital Heart ◽  
Balloon Dilation ◽  
Complex Congenital Heart Disease ◽  
Blalock Taussig Shunt

A 14-year-old female with complex congenital heart disease underwent a left-sided classical Blalock Taussig (BT) shunt 15 days after birth. Ten years after the operation her oxygen saturation had decreased significantly. An angiography revealed a severely stenosed BT shunt. Balloon dilation including implantation of a 6 × 13 mm stent was performed successfully. Immediately after intervention, oxygen saturation rose from 55% to 80 84% in room air. Follow-up at a year and a half later showed the classical BT shunt was still patent.

Implementation of Transition Programs can Prevent Another Lost Generation of Patients with Congenital Heart Disease

2008 ◽  
Vol 7 (4) ◽  
pp. 259-263 ◽  
Author(s):  
Philip Moons ◽  
Deborah Hilderson ◽  
Kristien Van Deyk
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Birth Defect ◽  
Congenital Heart ◽  
Transition Programs ◽  
Medical System ◽  
Lost Generation ◽  
Specialized Care ◽  
Lost To Follow Up

Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.

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