The Toronto congenital heart disease transition task force

Kovacs, Adrienne H.; Cullen-Dean, Geraldine; Aiello, Sandra; Wasyliw, Cindy; Harrison, Jeanine; Li, Qunyu; Oechslin, Erwin

doi:10.1016/j.ppedcard.2012.05.005

Cited by 17 publications

(19 citation statements)

References 25 publications

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“…The health passport is a tool promoted in adult CHD care (Jalkut & Allen , Kovacs et al . , Windram & Oechslin ). However, patients in this study had never read their health passports carefully and raised the crucial point that they were difficult to carry and likely to expose their personal information.…”

Section: Discussionmentioning

confidence: 96%

Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease

Chiang

Chen²,

et al. 2014

Journal of Advanced Nursing

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As patients with congenital heart disease transition from adolescence into adulthood, they must learn about their disease, overcome frustration and anxiety and develop self-care strategies for coexisting with congenital heart disease. Results of this study may serve as clinical care guidelines for adolescents and young adults with congenital heart disease and give a reference for developing transitional intervention strategies.

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Section: Discussionmentioning

confidence: 96%

Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease

Chiang

Chen²,

et al. 2014

Journal of Advanced Nursing

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“…Even at a policy level, disagreement exists. In Canada, for example, patients over the age of 18 cannot be admitted to pediatric hospitals [22], while the AAP’s statement on age limits in pediatrics states that pediatricians may be the “optimal source of health care past the age of 21” [23]. Given these different approaches, residents may be hesitant to discuss the topic.…”

Section: Discussionmentioning

confidence: 99%

Pediatric residents’ attitudes and practice patterns regarding transition to adult-oriented care

Hart

Deusen

Gonzaga

2017

Journal of Communication in Healthcare

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Background: Most youth with chronic illness will survive into adulthood. The complexity of the medical history and care in these patients necessitates a well-planned and coordinated transition over several years as they move from pediatric to adult-oriented health care. Methods: We assessed pediatric residents’ practice patterns and attitudes regarding transition communication by administering a survey about transition to pediatric, combined internal medicine-pediatrics, pediatric neurology, and combined psychiatry-child psychiatry-pediatric residents. Results: Among 110 residents who were contacted, 66 completed the survey, for a response rate of 61%. Surveyed residents report discussing transition with their patients when their patients are age 18 or older, when guidelines suggest a discussion should begin around age 12. Most residents felt that transition should be initially addressed one year prior to transfer. Residents also reported barriers such as lack of experience with transition and lack of role modeling by supervisors as barriers to providing transitional care. Conclusions: The practice patterns and attitudes of pediatric residents in this study do not reflect the recommendations that have been published regarding transitional care services to prepare patients and families for transfer from pediatric to adult-oriented care. In particular, most residents report that they start transition discussions when a patient is near the age of 18, rather than the age of 12 as guidelines suggest and as families would prefer. Pediatric residents need further education regarding transition, with particular emphasis on the need for early and frequent discussions with patients and families regarding transition.

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“…Using patient health passports has been promoted as an educational tool for addressing these needs in CHD patient care. 16,37,38 However, considerations of accessibility and feasibility may establish increasing interest in alternatives such as e-health or mobile health (m-health), thus recording the related data and providing exercise surveillance. 39 Healthy behavior in young people with CHD with regards to pregnancies and high-risk deliveries should also incorporate an organized, multidisciplinary approach.…”

Section: Discussionmentioning

confidence: 99%

Healthcare needs of adolescents with congenital heart disease transitioning into adulthood: a Delphi survey of patients, parents, and healthcare providers

Chen

Chiang

et al. 2016

European Journal of Cardiovascular Nursing

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Background: The increasing survival of children with congenital heart disease (CHD) challenges healthcare systems regarding how to manage the many health needs of patients undergoing transitional care. A comprehensive understanding of the perspectives of patients, parents, and healthcare providers is required. Objective: This study systematically identified the healthcare needs of adolescents with CHD transitioning into young adults by collecting the perspectives of patients, parents, and healthcare providers. Methods: A sample of CHD patients (n = 29), parents of children with CHD (n = 29), and healthcare providers (n = 16) completed the two-round Delphi study, and 64 healthcare needs were identified. The central tendency and the level of dispersion were computed in order to establish a consensus. Results: A consensus was reached on 25 healthcare needs including health, family, individual, interpersonal interaction, and policy dimensions, which were classified as important with a moderate to high level of agreement by all three groups. The three groups were strongly agreed that "encouraging the patient to learn health self-management" and "cultivating a positive attitude toward the illness" were very important. The opinions of the three groups differed significantly on 12 needs (p < 0.05) related to health, family, and policy dimensions. Conclusion: A consensus was reached on the needs that were identified as being potentially valid measures of the healthcare needs of adolescents with CHD transitioning into young adults. The identified needs can serve as the basis for establishing a transitional health passport and developing a clinical intervention for adolescents with CHD transitioning into young adults.

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The Toronto congenital heart disease transition task force

Cited by 17 publications

References 25 publications

Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease

Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease

Pediatric residents’ attitudes and practice patterns regarding transition to adult-oriented care

Healthcare needs of adolescents with congenital heart disease transitioning into adulthood: a Delphi survey of patients, parents, and healthcare providers

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