Leveraging technology for the assessment and monitoring of fragile infants with complex congenital heart disease in the community

Aim: To empower parents of infants with complex cardiac conditions to make life saving decisions wherever they are, using mobile application-based information and guidance, held on their smartphones Evidence gained from parents forums and studies about the Congenital Heart Assessment Tool (CHAT2)1-4 highlighted parental and clinicians fears about taking sick children home from hospital and venturing out into normal life.

Additionally, barriers to the success of CHAT24 include the anxieties of parents in managing frequent monitoring and reliable transmission of data.

The paper-based CHAT24 was developed for parents to monitor their infant s condition at home using a traffic light system to indicate healthcare intervention need, based on daily monitoring of key parameters and behaviours. CHAT24 provides a management plan for parents but relies on parents phoning the right person at the right time.

Leveraging technology to transmit data enables immediate communication with healthcare professionals.

This quality improvement project will be implemented with healthcare practitioners and parents at all stages, using readily available technologies through modern smartphone devices, whilst recognising digital poverty.

Phase 1 – Scoping exercise (1 month) Focus groups with parents, Charity Little Hearts Matter (LHM) and healthcare professionals using CHAT24 as a guide, to identify essential functional (e.g.

CHAT24 parameters) and non-functional (e.g. plain English) requirements to ensure the application meets everyone s needs.

Phase 2 – Mobile application development (3 months) A mobile application will be specified, designed, and developed based on the requirements gathered in phase-1, ensuring relevant accessibility and usability guidelines are met, whilst taking advantage of the research team s technical, software development, study design, clinical and academic experience.

Phase 3 – User testing (2 months) Undertake user testing with a group of healthcare professionals, technologists, parents and LHM using the developed application to ensure that it has the potential to address the concerns outlined above.