Transition and transfer from pediatric to adult care of young adults with complex congenital heart disease

Meadows, Alison Knauth; Bosco, Valerie; Tong, Elizabeth; Fernandes, Susan M.; Saïdi, A.

doi:10.1007/s11886-009-0042-8

Cited by 55 publications

(42 citation statements)

References 30 publications

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“…[11][12][13][14][15] In the current study, we demonstrate that a significant number of parents of children with moderate and complex CHD are unaware that national guidelines suggest LLCCC for their children. Such parents frequently stated that their health care team had not discussed this recommendation.…”

Section: Discussionmentioning

confidence: 67%

Parental Knowledge Regarding Lifelong Congenital Cardiac Care

Fernandes

Verstappen²,

Ackerman³

et al. 2011

Pediatrics

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Section: Discussionmentioning

confidence: 67%

Parental Knowledge Regarding Lifelong Congenital Cardiac Care

Fernandes

Verstappen²,

Ackerman³

et al. 2011

Pediatrics

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“…Across the three topics, patients identified 16‐18 years as the ideal age for health care providers to initiate discussions—in other words during the transition period from pediatric to adult care. These crucial topics of adult life should be incorporated into a comprehensive transition curriculum involving a multidisciplinary team (eg, social workers), to prepare young patients to navigate their lives with a chronic illness . “Education checklists” may be created in patient charts and reviewed on a scheduled basis or with changes in patient's education, career, health status, interest in starting a family, etc Peer support groups and informational seminars for patients and families around these topics can also be offered …”

Section: Discussionmentioning

confidence: 99%

Too little too late? Communication with patients with congenital heart disease about challenges of adult life

Deng

Gleason

Awh

et al. 2019

Congenital Heart Disease

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Objective To investigate the experiences and communication preferences of adult patients with congenital heart disease (CHD) in the domains of employment, insurance, and family planning. Design Patients ≥ 18 years of age completed a questionnaire about experiences and communication preferences regarding employment, health insurance, and family planning. Results Of 152 patients (median age = 33 years, 50% female, 35% with CHD of great complexity), one in four reported work‐related problems due to CHD and a quarter also recalled a previous gap in health insurance. Of females, 29% experienced an unplanned pregnancy. The median importance of discussion ratings (on a 0‐10 scale) were 3.5 (employment), 6.0 (insurance), and 8.0 (family planning). Few patients recalled discussions about employment (19%) or health insurance (20%). Over half recalled discussions about family planning, although males were less likely to have had these discussions than females (24% vs 86%, P < .001). Across the three domains, patients identified 16‐18 years as the most appropriate age to initiate discussion, although for patients who recalled discussions, they typically occurred between 20 and 25 years. Conclusions Adults with CHD commonly face employment, health insurance, and family planning challenges. However, discussions about these matters occur with less frequency than recommended and at older ages than patients would prefer. Communication about such issues should be incorporated into a comprehensive educational curriculum for adolescents during the process of transition to adult care.

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“…24 Knauth, Verstappen, Reiss, and Webb reported that many patients have large gaps in cardiac care in their transition to adult cardiology clinics and they may never receive genetic information regarding their heart defects. 25 This again demonstrates the importance of parent education, as parents are longitudinally involved in the care of their children and can help facilitate transitions in care.…”

Section: Practice Implicationsmentioning

confidence: 95%

Adolescents with congenital heart defects: a patient and parental perspective of genetic information and genetic risk

et al. 2020

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AbstractCongenital heart defects (CHDs) occur in 8 of 1000 live-born children, making them common birth defects in the adolescent population. CHDs may have single gene, chromosomal, or multifactorial causes. Despite evidence that patients with CHD want information on heritability and genetics, no studies have investigated the interest or knowledge base in the adolescent population. This information is necessary as patients in adolescence take greater ownership of their health care and discuss reproductive risks with their physicians. The objectives of this survey-based study were to determine adolescents’ recall of their own heart condition, to assess patient and parent perception of the genetic contribution to the adolescent’s CHD, and to obtain information about the preferred method(s) for education. The results show that adolescent patients had good recall of their type of CHD. Less than half of adolescents and parents believed their CHD had a genetic basis or was heritable; however, adolescents with a positive family history of CHD were more likely to believe that their condition was genetic (p = 0.0005). The majority of patients were interested in receiving additional genetics education and preferred education in-person and in consultation with both parents and a physician. The adolescents who felt most competent to have discussions with their doctors regarding potential causes of their heart defect previously had a school science course which covered topics in genetics. These results provide insight into adolescents’ perceptions and understanding about their CHD and genetic risk and may inform the creation and provision of additional genetic education.

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Transition and transfer from pediatric to adult care of young adults with complex congenital heart disease

Cited by 55 publications

References 30 publications

Parental Knowledge Regarding Lifelong Congenital Cardiac Care

Parental Knowledge Regarding Lifelong Congenital Cardiac Care

Too little too late? Communication with patients with congenital heart disease about challenges of adult life

Adolescents with congenital heart defects: a patient and parental perspective of genetic information and genetic risk

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