Study note

Congenital heart disease in adolescence: transition and individual care

THE CONTEXT
Adolescents with congenital heart disease have varied residual disease and sequelae, requiring individual assessment and a planned transition to adult services.

Individual assessment and care planning

FeatureDetails
Patient assessment
residual disease and sequelae vary with the underlying lesion and its severity; each patient must be assessed individually.
Management plan
the plan should be agreed with the patient and include short- and long-term goals and the timing of transition to adult care.
Education and employment
both may be adversely affected, and occupational activity levels need assessment.

Non-cardiac surgery

FeatureDetails
Pre-operative planning
surgery for associated congenital abnormalities carries increased risks and requires careful assessment.
Thrombotic and embolic risks
thrombosis and embolism from synthetic shunts or patches are recognised risks.
Fluid-related risk
fluid shifts may cause volume overload.
Cosmetic concerns
operative approaches should consider concerns such as the implantation site of an abdominal generator.

Exercise and genetic assessment

FeatureDetails
Mild or repaired defects
patients can undertake moderately vigorous exercise.
Complex disease
complex defects, cyanosis, ventricular dysfunction or arrhythmias require specialist evaluation and individualised exercise advice.
Genetic contribution
between 10% and 15% have a genetic basis, which should be assessed for implications for the patient's future children.
Genetic evaluation
assessment includes family history, evaluation of syndromic versus non-syndromic disorders and, sometimes, cytogenetics.

Life expectancy and shared decisions

FeatureDetails
Understanding prognosis
some adolescents with complex disorders mistakenly believe they have been cured; transition may be their first opportunity to receive information about mortality.
Decision-making
expectations about life expectancy need to be managed, and adolescents are often willing to discuss these issues and participate in decisions.
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