Development of a risk model for death or emergency readmission within one year following discharge from infant cardiac intervention and identification of patient risk groups for the purposes of service improvement. Submitted for publication 2015). Conversely, those who survive beyond the first year are much less likely to die later in childhood.3Healthcare service standards published by the UK Royal College of Nursing state that children and young people should only be treated in hospital when appropriate care cannot be provided in the community, and discharge should be planned once care can be provided at home.4 Tertiary paediatric cardiac centres and their linked secondary care providers (hospital based teams) have been grouped and organised into ‘congenital heart networks’ in the UK, partly https://www.excelhandbag.com to improve postdischarge care and outreach services,5 Of note, it has been reported that increased surveillance at home for complex cardiac babies (known as home monitoring programmes (HMP)), which require cooperation between different sectors of the health service, may improve postdischarge outcomes;6 10 however, the extent of implementation of HMPs in the UK is unclear and other elements of the patient pathway after discharge may also warrant improvement.As part of a wider ‘Infant Heart Study’, we aimed to capture and qualitatively analyse the views of professionals (across sectors of the health service and geographical regions) and of parents that had experienced difficult circumstances caring for an infant discharged after PCS, which could usefully inform future quality improvement efforts directed at the discharge process and postdischarge care of these patients.MethodsA specialist nurse based in each of the three participating centres identified parents whose child had undergone PCS in infancy and subsequently had an emergency readmission to a PICU or died outside the tertiary centre, and invited them to participate.
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