Task Force 2: special health care needs of adults with congenital heart disease

Foster, Elyse; Graham, T.P.; Driscoll, David J.; Reid, Graham J.; Reiss, John; Russell, Isobel A.; Sermer, Matthew; Siu, Samuel C.; Uzark, Karen; Williams, Roberta G.; Webb, Gary D.

doi:10.1016/s0735-1097(01)01277-3

Cited by 166 publications

(143 citation statements)

References 46 publications

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“…Individuals with CHD are more likely to be excluded from activities that require social interaction, such as sports, work or other activities, when others are overprotective. This can lead to feelings of helplessness in patients that are related to observable physical symptoms [5,6,14]. This may explain why individuals with fewer physical limitations perceive their QOL as better than those whose physical activities are more restricted.…”

Section: Discussionmentioning

confidence: 99%

“…The WHOQOL-BREF also assesses four dimensions of QOL: physical (questions 3, 4, 10, 15, 16, 17, and 18), psychological (questions 5,6,7,11,19, and 26), social (questions 20, 21, and 22), and environmental (questions 8, 9, 12, 13, 14, 23, 24, and 25). The environmental scale includes topics on physical security, home environment, financial resources, opportunities to acquire new information and abilities, availability of health care, physical environment, and transportation.…”

Section: Assessment Instrumentsmentioning

confidence: 99%

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Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

et al. 2011

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This study aimed to assess the quality of life (QOL) experienced by adolescents and young adults with congenital heart disease (CHD) and to determine which factors negatively affect adjustment and which factors increase resilience. The participants in the study were 74 patients with CHD (41 males and 33 females) ranging in age from 12 to 26 years (mean age, 18.76 ± 3.86 years). Demographic information and a complete clinical history were obtained. The participants were interviewed regarding topics such as social support, family educational style, selfimage, and physical limitations. They responded to questions in a standardized psychiatric interview (SADS-L) and completed a self-report questionnaire (WHOQOL-BREF) for assessment of QOL. Compared with the Portuguese population as a whole, the study patients had better QOL, especially with regard to the environmental dimension (t = 3.754; P = 0.000) and social relationships (t = 2.333; P = 0.022). Patients who had undergone surgery experienced poorer QOL in the physical dimension (t = -1.989; P = 0.050), in social relationships (t = -2.012; P = 0.048) and overall (Mann-Whitney U = 563.000; P = 0.037). Social support played a positive role in the QOL of the patients, both in the physical dimension (t = 3.287; P = 0.002) and in social relationships (t = 3.669; P = 0.000). A higher school achievement also was associated with higher levels of QOL overall (Mann-Whitney U = 457.000; P = 0.046) as well as in the physical (t = 2.045; P = 0.045) and environmental (t = 2.413; P = 0.018) dimensions. Physical limitations had a detrimental impact on general QOL (Mann-Whitney U = 947.500; P = 0.001) and on the physical (t = -2.910; p = 0.005) and psychological (t = -2,046; P = 0.044) dimensions. Patients with CHD tended to perceive QOL as better when their social networks were supportive.

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Section: Discussionmentioning

confidence: 99%

Section: Assessment Instrumentsmentioning

confidence: 99%

Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

et al. 2011

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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%

“…[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%

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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“…Kardiologen/innen zu verbreiten. Dieses Update der erstmals im Jahre 2001 publizierten Österreichischen Richtlinien lehnt sich an international anerkannte Vorschläge an insbesondere an die rezenten deutschen Empfehlungen [3][4][5][6][7] mit Adaptationen an die Situation in Österreich wo es notwendig war. Dabei erscheint eine Differenzierung in regionale und überre-gionale Versorgung der EMAH Patienten als sinnvoll.…”

unclassified

Empfehlungen zur Struktur der Betreuung von Erwachsenen mit angeborenen Herzfehlern (EMAH Patienten) in Österreich – Update 2011

Gabriel

Baumgartner

Gamillscheg

et al. 2013

Wien Klin Wochenschr

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Task Force 2: special health care needs of adults with congenital heart disease

Cited by 166 publications

References 46 publications

Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

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

Empfehlungen zur Struktur der Betreuung von Erwachsenen mit angeborenen Herzfehlern (EMAH Patienten) in Österreich – Update 2011

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