Home Monitoring Pilot Program for Infants with Complex Congenital Heart Disease

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Authors (including presenting author) :
Leung PS(1), Chan KL(1)(2), Au WK(1), Tsui PCB(1), Yung TC(1)
Affiliation :
(1)Department of Paediatric Cardiology, Queen Mary Hospital (2) Paediatric, Hong Kong Children's Hospital
Introduction :
Infants with complex congenital heart disease require cardiac surgeries in several stages. During the interstage period, they are at high risk for growth failure, serious morbidity and mortality. The Home Monitoring Program aims to empower caregivers to employ home monitoring on their baby's oxygen saturation, body weight, enteral intake and early warning signs of deterioration, so as to facilitate timely interventions prior to cardiopulmonary decompensation and ultimately improve their outcomes and reduce the interstage mortality.
Objectives :
1.Caregivers will demonstrate competency in performing home monitoring on the conditions of their baby who having complex congenital heart disease. 2.Infants recruited in the program will achieve optimized growth. 3.Readmission for unanticipated and major medical events will be prevented.
Methodology :
1.Infants in need of home monitoring were recruited into the program with the medical team. 2.Comprehensive pre-discharge education was provided to caregivers. 3.Individual parameters of home monitoring items were set for the infants by the program physician. 4.Caregivers monitored and recorded the oxygen saturation, body weight and enteral intake of their baby at home. 5.Weekly post-discharge phone follow-ups were conducted till the pre-set end point of program to review home monitoring data and explore any concern from caregivers. 6.Caregivers were taught to call for medical advice according to the action plan when early warning signs were detected. 7.Progress of home monitoring was reviewed regularly with the program physician.
Result & Outcome :
The pilot program has been launched since July 2018. Five patients with complex congenital heart disease have been recruited. All caregivers demonstrated competency in performing home monitoring upon discharge. One patient with suboptimal weight gain and fair enteral intake was identified during the phone follow-up and was admitted into ward for feeding and nutrition management. Interventions were implemented for two other patients with early warning signs. The others achieved satisfactory weight gain without any early warning signs after discharge. Most caregivers agreed that the program enhanced their capability and confidence in taking care of their baby. The Home Monitoring Pilot Program successfully established the collaboration with caregivers in the care transition from hospital to community. The effectiveness on reducing the interstage morbidity and mortality could not be concluded at the moment due to the small sample size and short course of program. Ongoing data collection and evaluation will be carried out for further improvement.

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