Transition in congenital heart disease: it takes a village

Gurvitz, Michelle; Saïdi, A.

doi:10.1136/heartjnl-2014-306030

Cited by 18 publications

(5 citation statements)

References 10 publications

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“…One reason frequently described was a strong patient or family desire to remain with their paediatric cardiologist, which is a common theme among other studies and is related to patients' attachment to the provider who has often known and managed the patient since infancy. [29][30][31] We believe that incorporation of an Adult CHD team member early into transitional care planning may ameliorate this concern by bridging an introduction to a new care team and offering the opportunity to form a relationship prior to actual care transfer. Another frequently cited reason our adult patients forego transfer of care was a desire to complete an ongoing milestone such as post-secondary education or a potential relocation.…”

Section: Discussionmentioning

confidence: 99%

A transition clinic intervention to improve follow-up rates in adolescents and young adults with congenital heart disease

et al. 2020

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Background:Children with congenital heart disease (CHD) require lifelong cardiology follow-up. Many experience gaps in care around the age of transition to adult-oriented care with associated comorbidity. We describe the impact of a clinic-based intervention on follow-up rates in this high-risk population.Methods:Patients ≥11 years seen in a paediatric outpatient CHD Transition Clinic completed self-assessment questionnaires, underwent focused teaching, and were followed on a clinic registry with assessment of care continuation. The cohort “lost to follow-up” rate, defined as absence from care at least 6 months beyond the recommended timeframe, was compared with a control group. Secondary outcomes included questionnaire scores and adult cardiology referral trends.Results:Over 26 months, 53 participants completed an initial Transition Clinic visit; 43% (23/53) underwent a second visit. Median participant age was 18.0 years (interquartile range 16.0, 22.0). The cohort’s “lost to follow-up” rate was 7.3%, which was significantly lower than the control rate (25.9%, p < 0.01). Multivariable regression analyses demonstrated clinic participation as the only factor independently associated with follow-up rates (p = 0.048). Transition readiness was associated with older age (p = 0.01) but not sex, univentricular heart, interventional history, or surgical complexity. One-third of adult participants transferred to adult care.Conclusions:A CHD Transition Clinic intervention can improve follow-up rates in adolescents and young adults. Age is an important factor in transition readiness, and retention of adults in paediatric care appears multi-factorial. We postulate that serial assessments of self-management, focused education, and registry utilisation may improve patient outcomes by reducing lapses in care.

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Section: Discussionmentioning

confidence: 99%

A transition clinic intervention to improve follow-up rates in adolescents and young adults with congenital heart disease

et al. 2020

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“…A poor transition can result in lapses in care and loss to follow‐up, with consequences such as greater risk of needing urgent interventions, increased morbidity, greater likelihood of a diagnosis of a new cardiac condition, and emotional stress for the patient (Gurvitz & Saidi, ; Yeung, Kay, Roosevelt, Brandon, & Yetman, ). Internationally, it has been found that few adolescents with CHD successfully transfer to adult care (Bohun et al, ; Moons et al, ; Wacker et al, ) and show a significant decline in clinic attendance after transferring to adult care (Heery, Sheehan, While, & Coyne, ).…”

Section: Introductionmentioning

confidence: 99%

“They're kept in a bubble”: Healthcare professionals' views on transitioning young adults with congenital heart disease from paediatric to adult care

McLoughlin¹,

Matthews

Hickey

2018

Child

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Action is required in order to improve the current transition process. Measures need to be taken to address the barriers that currently prevent a smooth transition process for young adult CHD patients. Professionals recommended the implementation of a structured transition clinic to deal with the wide variety of needs of transitioning adolescent patients and their families. Recommendations for future research are also made.

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“…Studies showed that adolescents with CHD struggle to successfully transit to adult care and assume control of their health-care management (48–50). Focused psychosocial care, including strategies for managing health and coping with medical decision-making, should be a key facet of the transition process (51). According to the American Heart Association’s transition guidelines (39), a standard core educational curriculum should include topics related to lifestyle issues including learning disabilities, anxiety, depression, and high-risk behaviors.…”

Section: Adolescents With D-tga: Cognitive and Psychiatric Outcomesmentioning

confidence: 99%

Neuropsychological and Psychiatric Outcomes in Dextro-Transposition of the Great Arteries across the Lifespan: A State-of-the-Art Review

et al. 2017

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Advances in prenatal diagnosis, perioperative management, and postoperative care have dramatically increased the population of survivors of neonatal and infant heart surgery. The high survival rate of these patients into adulthood has exposed the alarming prevalence of long-term neuropsychological and psychiatric morbidities. Dextro-transposition of the great arteries (d-TGA) is one of the most extensively studied cyanotic congenital heart defect (CHD) with regard to neurodevelopmental outcomes. Landmark studies have described a common neurodevelopmental and behavioral phenotype associated with d-TGA. Children with d-TGA display impairments in key neurocognitive areas, including visual–spatial and fine motor abilities, executive functioning, processing speed, and social cognition. As they grow older, they may face additional challenges with a worsening of deficits in higher order cognitive skills, problems in psychosocial adjustment and a higher-than-expected rate of psychiatric disorders, such as attention-deficit hyperactivity disorder, depression, and anxiety. The aim of this review is to summarize the available recent data on neuropsychological and psychiatric outcomes in individuals with d-TGA after the arterial switch operation. We present findings within a life-span perspective, with a particular emphasis on the emerging literature on adolescent and young adult outcomes. Finally, we propose avenues for future research in the CHD adult neuropsychology field. Among these avenues, we explore the potential mechanisms by which pediatric neurodevelopmental impairments may have lifelong adverse effects as well as alternative interventions that could optimize outcomes.

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Transition in congenital heart disease: it takes a village

Cited by 18 publications

References 10 publications

A transition clinic intervention to improve follow-up rates in adolescents and young adults with congenital heart disease

A transition clinic intervention to improve follow-up rates in adolescents and young adults with congenital heart disease

“They're kept in a bubble”: Healthcare professionals' views on transitioning young adults with congenital heart disease from paediatric to adult care

Neuropsychological and Psychiatric Outcomes in Dextro-Transposition of the Great Arteries across the Lifespan: A State-of-the-Art Review

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