This page provides an overview of key guidelines, position statements and standards relating to care of patients with adult congenital heart disease and how services should be structured.

ACHD guidelines & position statements

2020 ESC Guidelines for the management of adult congenital heart disease here

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2018 AHA/ACC Guideline for the Management of Adults With Congenital Heart Disease here

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Arrhythmias in congenital heart disease: a position paper of the European Heart Rhythm Association here

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Heart failure remains leading cause of morbidity & mortality in ACHD
While a robust evidence base is lacking, ESC Working Group for Adult Congenital Heart Disease position paper on the treatment of heart failure in ACHD highlights key principles in the assessment, treatment & management here

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Chronic heart failure in congenital heart disease: A Scientific Statement From the American Heart Association here
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2021 ESC Guidelines for the diagnosis and management of acute and chronic heart failure

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As the numbers of ACHD patients increase, so will presentations to emergency department care
This ESC position statement provides a consensus regarding the management of the most common clinical scenarios of ACHD patients presenting to the ED here

 

Transition to adulthood & transfer to adult care of adolescents with congenital heart disease: a global consensus statementhere

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Recommendations for advanced care planning in ACHD provides an overview of current evidence of benefits of & patients’ preferences for advance care planning (ACP) & practical advice regarding the implementation here

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ESC Recommendations for participation in competitive sport in adolescent and adult athletes with Congenital heart disease here

Many women with ACHD will consider & pursue pregnancy
The following guidelines provide information on risk assessment & management of pregnancy in ACHD

2018 ESC guidelines on the management of CVD in pregnancy here

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2021 Canadian Cardiology Society clinical practice update on heart disease in pregnancy here

Preconception counselling & risk assessment here

2015 ESC Guidelines for the management of infective endocarditis

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Scottish Dental Clinical Effectiveness Programme here
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Service structure & standards

In September 2015 NHS England published national standards by which congenital heart disease services are to be measured in England. Service providers were asked to measure themselves against these standards. In July 2016 NHS England published a set of proposals regarding the future commissioning of Congenital Heart Services. These proposals were "minded to decisions" that went back to public consultation which ended on 17/07/17. The final decisions of NHS England have been announced on 30th November 2017.

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The National Services Division (NSD) Specialist Congenital Heart Disease (CHD) standards for children and adults in Scotland reflects the NHS England CHD standards published in April 2016. The standards are intended to ensure that people in Scotland with congenital heart disease receive care of consistently high quality that is sustainable for the future.   The standards will enhance the congenital heart services which are already provided for the people of Scotland at the Royal Hospital for Children (RHC), Glasgow and Golden Jubilee National Hospital (GJNH), Glasgow.

The specialist standards provide a framework for people and their families affected with congenital heart disease to receive effective assessment, treatment and person-centred care.  The RHC and the GJNH have already achieved the majority of the specialist standards and a number are expected to be met in 2018. National Services Division acknowledges that a longer timescale is required to deliver a small number of these standards and we will continue to progress them with the providers and health boards across NHS Scotland to support their completion.

The standard of care in local hospital and community settings is an important factor in the provision of a seamless congenital cardiac pathway. Healthcare Improvement Scotland have committed to engage with key stakeholders to scope out this work, including potential options and timelines.

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General advice

Assessing fitness to drive: a guide for medical professionals

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