Congenital Heart Disease

The aim of the Congenital Heart Disease PSP is 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 will ask 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 is to prioritise through consensus the identified uncertainties about congenital heart disease in children and adults.  The PSP therefore will split into two parallel tracks focusing on the fetus/child and the adult, respectively, for the prioritisation stages.

The initial question gathering survey opened in July 2021 and is now closed. More information will be available here when the interim priority setting survey opens.

 

Watch Nigel Drury talking about the PSP on Living the Life on the Islam Channel (from 11 minutes 55 seconds) at https://watch.islamchannel.tv/watch/38118734 

 

Key documents

Congenital Heart Disease PSP Protocol