CHAMPION

• Research type

  Research Study

• Full title

  Congenital Heart Audit: Measuring Progress In Outcomes Nationally

• IRAS ID

  266393

• Contact name

  Sonya Crowe

• Contact email

  sonya.crowe@ucl.ac.uk

• Sponsor organisation

  University College London

• Clinicaltrials.gov Identifier

  Z6364106/2019/10/141 , UCL Data Protection Registration number

• Duration of Study in the UK

  2 years, 10 months, 20 days

• Research summary

  Our aim is to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England.

  About 5,600 babies are born with CHD every year in England. It is a complex, lifelong condition and many problems cannot be fully cured. Every year about 7,500 procedures are performed on children and 3,000 on adults. Measuring quality in CHD services is difficult. All hospitals submit data to a central audit database and the proportion of children surviving at one month after surgery is reported for each hospital, using a statistical equation (which our team developed) to take account of each child’s risk. However, reporting children’s survival at one month is not an ideal way of spotting better or worse than expected services as nearly all children survive at least this long (98%).

  NHS England highlighted two main reporting gaps:
  1) There is no overview of survival following adult surgery by hospital or any way to account for each adult’s risk
  2) Longer-term outcomes would be more relevant than survival just one month after surgery.

  Quantitative research:
  Using an existing combined dataset with information on all operations for CHD patients, their stays in any English hospital and their life status, we will:
  • define the scope of adult CHD procedures for national reporting, identify what outcomes to measure, explore potential risk factors, and develop a fair way of reporting adult surgical outcomes
  • investigate longer-term outcomes, tracking people with representative diagnoses through the combined dataset, describing their long-term survival and the number of operations within and outside the anticipated treatment plan

  Online forum research:
  We will work with three CHD charities to capture patient and family views on outcomes that matter and make sense through online forums.

  Finally, we will develop prototype software tools to calculate and display longer-term and adult outcomes.

• REC name

  North of Scotland Research Ethics Committee 2

• REC reference

  20/NS/0022

• Date of REC Opinion

  14 Feb 2020

• REC opinion

  Favourable Opinion