Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues

Sable, Craig; Foster, Elyse; Uzark, Karen; Bjornsen, Katherine D.; Canobbio, Mary M.; Connolly, Heidi M.; Graham, T.P.; Gurvitz, Michelle; Kovacs, Adrienne H.; Meadows, Alison Knauth; Reid, Graham J.; Reiss, John; Rosenbaum, Kenneth N.; Sagerman, Paul J.; Saïdi, A.; Schonberg, Rhonda; Shah, Sangeeta; Tong, Elizabeth; Williams, Roberta G.

doi:10.1161/cir.0b013e3182107c56

Cited by 393 publications

(292 citation statements)

References 182 publications

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“…It was conducted as part of a quality improvement project for adolescents with varying degrees of CHD (mild to severe), to improve their experience when transitioning from a pediatric cardiologist to an adult cardiologist. The clinical quality improvement project was based on the "got transition" website [37], the American Heart Association's best practices for transitioning adolescents with CHD [13], and an ongoing randomized control trial for transitioning adolescents with CHD. [10] The formative research included a literature review, parent and adolescent interviews, and discussions with two expert panels.…”

Section: Methodsmentioning

confidence: 99%

“…[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. [17] Disparities become further magnified in ethnic minorities.…”

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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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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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show abstract

“…Several reviews have identified worse health care outcomes among adolescents and young adults with special health care needs who did not transition appropriately. [12][13][14][15] Other studies have evaluated the benefits of adequate health care transitions for these individuals. Benefits often associated with adequate transitions include reduced medical complications, improved patient-reported outcomes, greater adherence to care, positive patient experience and lower cost of health care.…”

mentioning

confidence: 99%

Health Care Transitions for Adolescents and Young Adults With Special Health Care Needs: Where Are We Now?

Mubanga

Baumgardner

Kram

2017

Journal of Patient-Centered Research and Reviews

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“…Re-do sternotomy and minimal experience of adult cardiothoracic surgery teams in performing CABG in single-ventricle patients previously palliated by Fontan procedure are two other examples. These issues and others were addressed to some extent in the literature, and their solutions have been proposed and implemented [11,13]. Hybrid teams consisting of adult and congenital cardiologists and cardiothoracic surgeons may be the ideal team to manage these patients in the operating room and the immediate post-operative period.…”

mentioning

confidence: 99%

Coronary Artery Bypass Grafting in Single-Ventricle Patients Palliated with Fontan Procedure: Future Consideration

Awad

Abdelhady

2014

Pediatr Cardiol

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Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues

Cited by 393 publications

References 182 publications

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

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

Health Care Transitions for Adolescents and Young Adults With Special Health Care Needs: Where Are We Now?

Coronary Artery Bypass Grafting in Single-Ventricle Patients Palliated with Fontan Procedure: Future Consideration

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