Transition Intervention for Adolescents With Congenital Heart Disease

Mackie, Andrew S.; Rempel, Gwen R.; Kovacs, Adrienne H.; Kaufman, Miriam; Rankin, Kathryn N.; Jelen, Ahlexxi; Yaskina, Maryna; Sananes, Renée; Oechslin, Erwin; Dragieva, Dimi; Mustafa, Sonila; Williams, Elina; Schuh, Michelle; Manlhiot, Cedric; Anthony, Samantha J.; Magill‐Evans, Joyce; Nicholas, David; McCrindle, Brian W.

doi:10.1016/j.jacc.2018.02.043

Cited by 126 publications

(121 citation statements)

References 28 publications

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“…Evidence shows that between 21% and 76% of patients experience a lapse in regular follow-up cardiology care after transfer from paediatric to adult care [119][120][121][122][123][124][125]. The transition of patients with a Fontan circulation from paediatric to adult cardiology care requires a multidisciplinary, holistic, individualised, flexible, and carefully planned approach, with equal emphasis on patients and their parents and carers [126][127][128][129].…”

Section: Overviewmentioning

confidence: 99%

“…Transition should commence during early adolescence and continue into adulthood, until the patient is successfully engaged with adult congenital cardiology care [127,130]. This process should be facilitated by paediatric and adult cardiology teams, including a dedicated transition lead (or leads), who will ideally be a congenital cardiology nurse [26,121,131].…”

Section: Essentials Of Transitionmentioning

confidence: 99%

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Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Zentner

Celermajer

Gentles

et al. 2020

Heart, Lung and Circulation

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The Fontan circulation describes the circulatory state resulting from an operation in congenital heart disease where systemic venous return is directed to the lungs without an intervening active pumping chamber. As survival increases, so too does recognition of the potential health challenges. This document aims to allow clinicians, people with a Fontan circulation, and their families to benefit from consensus agreement about management of the person with a Fontan circulation. The document was crafted with input from a multidisciplinary group of health care providers as well as individuals with a Fontan circulation and families. It is hoped that the shared common vision of long-term wellbeing will continue to drive improvements in care and quality of life in this patient population and eventually translate into improved survival.

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Section: Overviewmentioning

confidence: 99%

Section: Essentials Of Transitionmentioning

confidence: 99%

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Zentner

Celermajer

Gentles

et al. 2020

Heart, Lung and Circulation

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“…Current evidence suggests that well‐planned, effective transitional care can prevent deterioration in AYAs’ health and disengagement with health care; stable or improved disease control; improved knowledge, self‐management skills and patient satisfaction; improved relationships with healthcare professionals (HCPs) and parent satisfaction (Gabriel, McManus, Rogers, & White, ; Ladouceur et al, ; Mackie et al, ; Pyatak et al, ; van Staa, Sattoe, & Strating, ). In contrast, inadequate transition is associated with poor clinic attendance, loss to follow‐up; increased nonadherence to treatment, increased morbidities, lower physical well‐being, increased emergency/hospital admissions and adverse health outcomes (Garvey et al, ; Heery, Sheehan, While, & Coyne, ; Sheehan, While, & Coyne, ).…”

Section: Introductionmentioning

confidence: 99%

Healthcare transition for adolescents and young adults with long‐term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences

Coyne

Sheehan

Heery

et al. 2019

Journal of Clinical Nursing

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Aim and objectives To examine the needs and perspectives regarding healthcare transition for adolescents and young adults (AYAs) with the following long‐term conditions: diabetes, cystic fibrosis and congenital heart disease. Background Transition of AYAs within healthcare services has become increasingly important as more children are surviving into adulthood with long‐term conditions. Yet, limited empirical evidence exists regarding transition experiences. Design Qualitative study fulfilling the completed consolidated criteria for reporting qualitative studies criteria (see Appendix S1). Methods Semi‐structured interviews with AYAs aged 14–25 years (n = 47), parents (n = 37) and health professionals (n = 32), which was part of a larger mixed‐methods study. Sample was recruited from two children's hospitals and four general hospitals in Ireland. Results Transfer occurred between the ages of 16–early 20s years depending on the service. None of the hospitals had a transition policy, and transition practices varied considerably. Adolescents worried about facing the unknown, communicating and trusting new staff and self‐management. The transition process was smooth for some young adults, while others experienced a very abrupt transfer. Parents desired greater involvement in the transition process with some perceiving a lack of recognition of the importance of their role. In paediatric services, nurses reported following‐up adolescents who struggled with treatment adherence and clinic attendance, whereas after transfer, little effort was made to engage young adults if there were lapses in care, as this was generally considered the young adults’ prerogative. Conclusions The amount of preparation and the degree to which the shift in responsibility had occurred prior to transition appeared to influence successful transition for AYAs and their parents. Relevance to clinical practice Nurses in collaboration with the multidisciplinary team can help AYAs develop their self‐management skills and guide parents on how to relinquish responsibility gradually prior to transition.

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“…Various transition education programs have being experimented worldwide in patients with CHD, however, their real impact on patient care has been scarcely evaluated. [5,6,[11][12][13] Heterogeneity in terms of type of education, disease severity and patient demographic characteristics may result in biased interpretation on the actual program's e cacy. Moreover, patient reported outcomes assessment such as health-related quality of life (QoL), and qualitative analyses, should be part of such education programs' evaluation.…”

Section: Introductionmentioning

confidence: 99%

Impact of a Transition Education Program on the Quality of Life in Pediatric Patients with Congenital Heart Disease: Study Design for a Randomised Controlled Trial

Werner¹,

Bredy²,

Lavastre³

et al. 2020

Preprint

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Background: Recent advances in the field of congenital heart disease (CHD) led to an improved prognosis of the patients and in consequence the growth of a new population: the grown up with congenital heart disease. Until recently, more than 50% of these patients were lost to follow up because of the lack of specialized structures. The critical moment is the transition between paediatric and adult unit. Therapeutic education is crucial to solve this issue by helping patient to become independent and responsible. The TRANSITION randomized trial aims to assess the impact of a transition education program on the quality of life (QoL) of adolescents and young adults with CHD. Methods: multicentre, randomised, controlled, parallel arm study in CHD patients aged from 13 to 25 years old. Patients will be randomised into 2 groups (Education program vs. no intervention). The primary outcome is the change in self-reported QoL between baseline and 12-month follow-up. A total of 100 patients in each group is required to observe a significant increase of the overall QoL score of 7±13.5 points (on 100) with a power of 80% and an alpha risk of 5%. The secondary outcomes are: clinical outcomes, cardiopulmonary exercise test parameters (VO2max,VE/VCO2 slope), level of knowledge, physical and psychological status.Discussion: As the current research is opening on patient related outcomes, and as the level of proof in therapeutic education still low, we sought to assess the efficacy of a therapeutic education program on the QoL of CHD patients with a randomized trial.Trial registration: This study was approved by the National Ethics Committee (South-Mediterranean IV 2016-A01681-50) and was registered on Clinicaltrials.gov (NCT03005626) on 29th December 2016

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Transition Intervention for Adolescents With Congenital Heart Disease

Abstract: A nurse-led intervention reduced the likelihood of a delay in adult CHD care and improved CHD knowledge and self-management skills. (Congenital Heart Adolescents Participating in Transition Evaluation Research [CHAPTER 2]; NCT01723332).

Cited by 126 publications

References 28 publications

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Healthcare transition for adolescents and young adults with long‐term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences

Impact of a Transition Education Program on the Quality of Life in Pediatric Patients with Congenital Heart Disease: Study Design for a Randomised Controlled Trial

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