Loss to follow-up of adults with repaired congenital heart disease

Heart ◽  
2012 ◽  
Vol 99 (7) ◽  
pp. 440-441 ◽  
Author(s):  
Christopher Wren ◽  
John J O'Sullivan
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Loss To Follow Up

scholarly journals Transition for patients with congenital heart disease in the UK: need for a universal model with adequate training and support

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
K Krishnathasan ◽  
A Constantine ◽  
S Fitzsimmons ◽  
D Taliotis ◽  
R Bedair ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Administrative Support ◽  
Adult Care ◽  
Loss To Follow Up ◽  
Transition Service ◽  
Transition Care ◽  
The Uk

Abstract Background Adolescence is a vulnerable period for patients with congenital heart disease (CHD). Transition is a process that guides these patients through adolescence and ensures a smooth transfer to adult services, in order improve adherence to medical care and reduce loss to follow-up. While the importance of a formal Transition process is widely recognised and a requirement for specialist services in the UK, the optimal structure and delivery of Transition remains a matter of debate. Aims To examine the different models of Transition currently in place in specialist CHD centres around the UK. Methods A survey of Adult CHD centres in the UK was performed. A focus was placed on the structure of the Transition service, relevant training and areas of perceived improvement. Results There were 10 responses to our survey covering 10 specialist CHD centres. All respondents were consultant adult CHD specialists, looking after patients from the age of 16 [14–17] years. All centres have a specialised Transition service, which runs from the age 13 [11–15] to 18 [16–25] years (duration of transition 5 [2–13] years). The majority of centres (80%) report providing transition care “well before” transfer to adult care, whereas 20% provide transition care at or immediately before transfer (i.e. first adult CHD appointment). Transition is delivered by physicians and clinical specialist nurses in approximately equal numbers in 9 (90%) centres and exclusively by clinical nurse specialists in 1 (10%) centre. A median of 2 [1–5] visits are planned for each patient, with 7 (70%) centres seeing patients at least twice during transition. The majority, but not all centres (70%) provide a health passport during transition. A significant number of centres felt they werer not receiving sufficient support in the following domains: financial (50%), training (30%), clinical space (30%), referrals from paediatrics (50%). All respondents felt that their Transition service had room for improvement. Other areas of improvement highlighted included reduction in loss to follow-up, difficulties in providing a Transition service to patients followed in peripheral hospitals, the need for more support from paediatric services in referring all appropriate patients, and dedicated administrative support. The vast majority of respondents (9, 90%) felt equipped with the appropriate skills to care for transition patients. However, few (2, 20%) had completed formal training in more than one area related to adolescent health and transition. Conclusions While all CHD centres have a Transition service, Transition models and delivery differs significantly. There is urgent need for research in this area to develop a unified model, greater financial support and relevant training to optimise care. Figure 1. Participating UK centres Funding Acknowledgement Type of funding source: None

scholarly journals RISK FACTORS ASSOCIATED WITH LOSS TO FOLLOW-UP IN YOUNG ADULTS WITH CONGENITAL HEART DISEASE

2012 ◽  
Vol 59 (13) ◽  
pp. E790
Author(s):  
Mark D. Norris ◽  
Gary Webb ◽  
Dennis Drotar ◽  
Asher Lisec ◽  
Jesse Pratt ◽  
...  
Keyword(s):  
Risk Factors ◽  
Congenital Heart Disease ◽  
Young Adults ◽  
Heart Disease ◽  
Congenital Heart ◽  
Loss To Follow Up ◽  
Factors Associated

Risk factors for loss to follow-up among children and young adults with congenital heart disease

2011 ◽  
Vol 22 (3) ◽  
pp. 307-315 ◽  
Author(s):  
Andrew S. Mackie ◽  
Gwen R. Rempel ◽  
Kathryn N. Rankin ◽  
David Nicholas ◽  
Joyce Magill-Evans
Keyword(s):  
Risk Factors ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Confidence Interval ◽  
Odds Ratio ◽  
Congenital Heart ◽  
Family Income ◽  
Loss To Follow Up ◽  
History Of

AbstractObjectiveTo identify risk factors for loss to cardiology follow-up among children and young adults with congenital heart disease.MethodsWe used a matched case-control design. Cases were born before January, 2001 with moderate or complex congenital heart disease and were previously followed up in the paediatric or adult cardiology clinic, but not seen for 3 years or longer. Controls had been seen within 3 years. Controls were matched 3:1 to cases by year of birth and congenital heart disease lesion. Medical records were reviewed for potential risk factors for loss to follow-up. A subset of cases and controls participated in recorded telephone interviews.ResultsA total of 74 cases (66% male) were compared with 222 controls (61% male). A history of missed cardiology appointments was predictive of loss to follow-up for 3 years or longer (odds ratio 13.0, 95% confidence interval 3.3–51.7). Variables protective from loss to follow-up were higher family income (odds ratio 0.87 per $10,000 increase, 0.77–0.98), cardiac catheterisation within 5 years (odds ratio 0.2, 95% confidence interval 0.1–0.6), and chart documentation of the need for cardiology follow-up (odds ratio 0.4, 95% confidence interval 0.2–0.8). Cases lacked awareness of the importance of follow-up and identified primary care physicians as their primary source of information about the heart, rather than cardiologists. Unlike cases, controls had methods to remember appointments.ConclusionsA history of one or more missed cardiology appointments predicted loss to follow-up for 3 or more years, as did lack of awareness of the need for follow-up. Higher family income, recent catheterisations, and medical record documentation of the need for follow-up were protective.

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 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.

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