Task Force 5: adults with congenital heart disease: access to care

Skorton, David J.; Garson, Arthur; Allen, Hugh D.; Fox, James M.; Truesdell, Susie C.; Webb, Gary D.; Williams, Roberta G.

doi:10.1016/s0735-1097(01)01274-8

Cited by 68 publications

(55 citation statements)

References 8 publications

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“…In 2001, the American College of Cardiology published their recommendations regarding health care for adults with congenital heart disease [5,8,9]. Adults with moderate and complex congenital heart disease (CHD) who require non-cardiac surgery have special needs to be addressed by the surgical and anesthesia team.…”

Section: Discussionmentioning

confidence: 99%

Laparoscopic Cholecystectomy for Children with Repaired Tetralogy of Fallot with Valve Replacement on Anticoagulant: A Case Report and Anticoagulant Management

Barman¹

2014

J Cardiovasc Dis Diagn

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A 7 year old boy with a history of repaired tetralogy of Fallot with aortic valve replacement was scheduled to undergo laparoscopic cholecystectomy. His significant history comprises of post cardiac surgery with warfarin anticoagulant. Perioperatively warfarin was converted to low molecular weight heparin and the patient underwent general endotracheal anaesthesia with caudal epidural anaesthesia for laparoscopic cholecystectomy. Anaesthesia induction, intraoperative course and postoperative period proceeded uneventfully and the patient quickly progressed to the preoperative level of functioning. The perioperative anticoagulant management in such patients of repaired tetralogy of Fallot with aortic valve replacement is reviewed.

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Section: Discussionmentioning

confidence: 99%

Laparoscopic Cholecystectomy for Children with Repaired Tetralogy of Fallot with Valve Replacement on Anticoagulant: A Case Report and Anticoagulant Management

Barman¹

2014

J Cardiovasc Dis Diagn

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“…15 Other issues that present challenges to this population and areas for future research are employability, insurability (medical/life), contraception/pregnancy, genetic transmission, and exercise. 15,16 …”

Section: Single Ventricle Congenital Heart Disease: a Growing Populationmentioning

confidence: 99%

Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade

et al. 2007

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Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade The advancements in surgical technique and perioperative care have significantly improved the survival of children with single ventricle (SV) congenital heart disease (CHD) over the past decade. The population who have undergone the Fontan operation are growing into adulthood and facing many unique challenges. Past research has focused on functional and neurodevelopmental outcomes with inferences made to health-related quality of life (HRQOL). With the population who have undergone the Fontan operation surviving into adulthood, little research has been directed toward the self-report of HRQOL in adolescents and young adults after surgical palliation. Questions still remain on how these patients will transition into adulthood and whether they will live normal productive lives. This article reviews the literature related to HRQOL in the SV subgroup of CHD. In addition, an overview of newly developed disease-specific HRQOL instruments is presented as well as limitations and future research in HRQOL of the SV Fontan population.

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“…[1,2] Improvements in the care of those with severe CHD have lead to a decline in childhood CHD mortality over the last 20 years [3], with roughly 1 million survivors now reaching adulthood. [4][5][6][7][8] This emerging 'survivor' population requires life-long surveillance and disease management, as they are often palliated but not cured [9] , putting them at risk for substantial morbidity and mortality and placing a large burden on healthcare resources. [10] While it is critical that no CHD patients suffer lapses in cardiac care, this is often not the case.…”

Section: Introductionmentioning

confidence: 99%

“…Further concerning is that lapses in CHD care appear to be a predictor for morbidity. [11] Disparities in the medical care provided to the growing CHD adolescent survivor population involves: (1) poor care transition (an age and developmentally appropriate process, addressing the medical, psychosocial and educational/vocational aspects of care) from child-centered to adult-centered healthcare [8] [ 12] and (2) lack of appropriate transfer of care (the point at which an adult cardiac provider assumes the medical care of a CHD patient). [1,2,[12][13][14] Lack of assessment of transition readiness (TR) (the capacity of the adolescent and medical team to initiate and successfully complete the transition process) [15,16], compounds disparities in quality care.…”

Section: Introductionmentioning

confidence: 99%

“…[17] Disparities become further magnified in ethnic minorities. [4][5][6][7][8]13,18] Beyond healthcare access, disease knowledge, and TR, studies show a mentoring relationship (MR) [19][20][21] for adolescents with chronic disease is crucial for successful transition to adult care. [22] The transition period is a vulnerable time for adolescents with CHD, and many drop out of active health care.…”

Section: Introductionmentioning

confidence: 99%

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Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research (Preprint)

Lopez¹,

O’Connor²,

King³

et al. 2018

Preprint

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Abstract:Background: Congenital heart diseases (CHDs) are the most common type of birth defects. Improvements in CHD care have led to ~1.4 million survivors reaching adulthood. Thus, successful transition and transfer from pediatric to adult care is crucial. Unfortunately, <30% of adults with CHD successfully transition to adult care; this number is lower for minority and lower socioeconomic status (SES) populations. Few CHD programs exist to facilitate successful transition. Objective: To describe the development of a prototype mobile application (app) for CHD adolescents to facilitate transition.Methods: A literature search regarding best practices in transition medicine for CHD was conducted to inform app development. Formative research with a diverse group of CHD adolescents and their parents was conducted to determine gaps and needs for CHD transition to adult care. As part of the interview, surveys assessing transition readiness and CHD knowledge were completed. Two adolescent CHD expert panels were convened to inform educational content and app design.Results: Literature review revealed 113 articles, of which 38 were studies on transition programs and attitudes and three identified best practices in transition specific to CHD. Adolescents (n=402) participating in semi-structured interviews were 15-22 years old (Median age 16 years), female (42%), and racially/ethnically diverse (12.6% African American; 37.4% Latino. 36.4% received public insurance. Most adolescents (76.7%) had moderate or severe CHD complexity and reported minimal CHD understanding (79.2% aged 15-17 years and 61.5% aged 18-22 years). Average initial transition readiness score was 50.9/100, meaning that transition readiness training was recommended. A subset of participants (n=363) were asked about technology use: 94.5% reported having access to a smartphone. Interviews with parents revealed limited interactions with the pediatric cardiologist with transition-related topics: 79% reported no discussions regarding future family planning, and 55% reported the adolescent had not been screened for mental health concerns (depression, anxiety). Further, 66% reported not understanding how health care changes as adolescents become adults. Adolescents in the expert panel (n=6 total; two groups of n=3) expressed interest in a CHD-specific tailored app consisting of quick access to specific educational questions (e.g., "can I exercise"), a CHD story-blog forum, a mentorship platform, a question and answer space, and a transition checklist to facilitate transition. They expressed interest in using the app to schedule CHD clinic appointments and medication reminders. Based on this data, a prototype mobile application was created to assist in adolescent CHD transition.Conclusions: Formative research revealed that most adolescents with CHD had access to smartphones, were not prepared for transition to adult care, and were interested in an app to facilitate transition to adult CHD care. Understanding their needs, interests, and concerns will lead to the de...

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Task Force 5: adults with congenital heart disease: access to care

Cited by 68 publications

References 8 publications

Laparoscopic Cholecystectomy for Children with Repaired Tetralogy of Fallot with Valve Replacement on Anticoagulant: A Case Report and Anticoagulant Management

Laparoscopic Cholecystectomy for Children with Repaired Tetralogy of Fallot with Valve Replacement on Anticoagulant: A Case Report and Anticoagulant Management

Health-related quality of life: A closer look at related research in patients who have undergone the Fontan operation over the last decade

Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research (Preprint)

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