A community-based early warning tool for infants with complex heart conditions

Great Ormond Street Hospital for Children NHS Foundation Trust

  • Led by Great Ormond Street Hospital for Children NHS Foundation Trust, in partnership with University Hospital of Southampton NHS Trust, Newcastle upon Tyne Hospitals NHS Trust, Birmingham Women’s and Children’s NHS Trust, Little Heart Matters and the University of Worcester.
  • Tested an early warning tool as part of home monitoring of infants with complex congenital heart disease.
  • Supports decision making by families and children’s community teams, therefore improving safety and quality of care, and standardising care provision.
  • Project ran from September 2016 to November 2017. 

Infants with complex congenital heart disease, single ventricle and shunt dependent physiology, account for fewer than 110 infants per year. However, these children need multiple operations and the risks of mortality and morbidity are high, especially in the first three to five months. 

Home monitoring programmes have been shown to reduce the risks of mortality and morbidity in children after discharge home.

This project involved evaluating the effectiveness of a community-based early warning ‘traffic light’ system for use by families and children’s community nursing teams. It standardises and supports the decisions around escalating the infant’s care to clinical teams. 

The project was rolled out at four sites across the country. The system, ‘CHAT2’, uses red (emergency), orange (seek advice) and green (continue usual care), with five physiological parameters and one parental concern parameter. Parents/carers were taught to make at least one daily assessment of their infant.

CHAT2 was trialled using a retrospective review of clinical records, table-top scenarios and a simulation scenarios workshop. It was then trialled in the clinical setting with six infants. The system triggered correctly and was used effectively by the parent/carer to raise concerns. There was positive feedback from parents/carers and clinical teams. 

The main challenges encountered were an underestimation of the diversity of how services are provided to these patients, and the increased time and resources needed for effective communication at a national level.

CHAT2 will continue to be embedded across the four centres, and further funding is being sought to support implementation across the national cardiac centres. 

Contact information

For more information about this project, please  Liz Smith, Lead Advanced Nurse Practitioner, Great Ormond Street Hospital for Children NHS Foundation Trust.

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