Congenital Heart Disease

The aim of the Congenital Heart Disease PSP was to identify the unanswered questions about congenital heart diseases in adults and children, from patient, carer (primarily parents) and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address.   

The PSP asked patients, carers and clinicians about their experiences of the management of congenital heart disease throughout life, including prior to birth, focusing on:

  • Diagnosis, during pregnancy or after birth
  • Treatment (medical therapy, catheter intervention, surgery including mechanical support & transplantation, lifestyle, or psychosocial intervention), and
  • Outcomes of the conditions and/or treatments and the impact on patients and their families, including the physical, psychological, and social effects of living with congenital heart disease.

The aim of the final stage of the priority setting process was to prioritise through consensus the identified uncertainties about congenital heart disease in children and adults.  The PSP therefore split into two parallel tracks focusing on the fetus/child and the adult, respectively, for the prioritisation stages.

Watch Nigel Drury talking about the PSP on Living the Life on the Islam Channel (from 11 minutes 55 seconds) at  

The two Congenital Heart Disease Top 10s in Child/Antenatal, and Adults, were published in November 2022.

The image above shows a Steering Group meeting of the Congenital Heart Disease PSP


The image above shows the workshop in June 2022 to agree the priorities for Adult Congenital Heart Disease


The image above shows the workshop in June 2022 to agree the priorities for Child/Antenatal Congenital Heart Disease

Key documents

Congenital Heart Disease PSP protocol 

Congenital Heart Disease PSP question verification form

Congenital Heart Disease PSP engagement summary 

Congenital Heart Disease PSP national strategy report