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For children with duct-dependent pulmonary blood flow, palliative management may include creation of a surgical systemic-pulmonary shunt, or stenting of the arterial duct. Following either procedure, patients enter a window of high risk due to the potential for acutely obstructed pulmonary blood flow. Attention has increasingly been turned therefore to improving the early detection of shunt or duct complications, in an effort to reduce inter-stage morbidity and mortality.
The Home Monitoring Programme (HMP) was pioneered by the Children’s Hospital of Wisconsin because of a concern of high mortality between hospital discharge and the second surgical stage of management in children with Hypoplastic Left Heart Syndrome (HLHS). Implementation of the HMP was based on the hypothesis that a drop in oxygen saturation from baseline, poor weight gain or weight loss may predict the presence of serious anatomic lesions or evolving illness and prompt life-saving intervention. The introduction of this programme has been proven to reduce inter-stage mortality. This practice has been adopted in many centres with HLHS programmes in the USA, and increasingly the United Kingdom. The Royal Hospital for Children (RHC) in Glasgow introduced a HMP for children with HLHS in 2011.
At RHC, the HMP developed for children with HLHS was extended and adapted for use in all children with conditions in which pulmonary blood flow is shunt or stent-dependent. The discharge of infants with such conditions is conditional upon fulfilling the discharge criteria dictated by the HMP, including optimised medication, nutritional status and the demonstration of parental understanding and program compliance.
Principally this service will be delivered by the CNS Team and Paediatric Cardiology Dietetics, and supported where appropriate by:
This protocol is applicable to every infant with shunt or ductal stent-dependent pulmonary blood flow.
Any patient on the HMP who turns one year of age, will ordinarily cease being on the programme unless they remain shunt or stent dependent, and to remain on the programme, the named Cardiologist will need to request this.
The HMP criteria may no longer be applicable and suitable for patients over one year of age, and so this will need to be considered.
Please see “Children who are over one year of age and no longer shunt or stent dependent” section below for further information.
It must be remembered that each child will have an individually-prescribed set of normal parameters. It is critical that deviation from the norm for a particular patient be associated with a low threshold for early medical review.
In the first instance this may be at GP (if appropriate), Local Hospital, or RHC.
The Cardiologist, CNS Team and Paediatric Cardiology Dietitian are to be notified of A&E attendances immediately
CNS update the CNS team and Dietitian on a weekly basis. This includes each HMP patient’s weekly data and the highlighting of any concerns.
The HMP MDT Team meet on a monthly basis as a channel of communication surrounding the HMP patients.
As outlined in the application section of this protocol, ordinarily the programme will be discontinued in children who reach one year of age and/or who are no longer shunt or stent-dependent, as the programme may no longer be suitable and applicable.
In the instance of a child reaching one year whilst on the HMP, the named Consultant Cardiologist must review the child’s clinical status and the suitability of the programme for the child. If it is deemed to remain appropriate, it must then be requested by the Consultant that the child continues with the programme.
This decision should then be communicated between the team and documented in the child’s records. Any amendments to the programme for the child should also be communicated and clearly documented.
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Last reviewed: 22 December 2023
Next review: 30 September 2026
Author(s): Lorraine Mulholland; Dr Ben Smith; Laura Flannagan
Approved By: Scottish Paediatric Cardiac Service