Home Monitoring Project for children with complex congenital heart disease
In Colombia, congenital malformations are the second cause of death in children under 1 year of age and were responsible for 23% of deaths between 2005 and 2017.
In 2015, approximately 8,000 children per year were born with congenital heart disease (heart malformation) and by 2006 there were a total of 2,349 heart surgeries per year, many of them high risk (RACHS 3 and 6).
Some of the newborns may need a palliative or compensatory procedure through surgery, a catheterization procedure (using wires through the veins and arteries, without opening the chest) or mixed or hybrid (surgery plus catheterization), with this The aim is for the child to gain weight and be stronger for a second surgical time.
The time after going home after the first procedure until the second, it is called interstage and in this period situations such as common viral infections, a fever, an episode of diarrhea, can seriously affect children.
To face these risks, developed countries have created programs to monitor children at home during the interstage, achieving significant reductions in mortality.
The foregoing motivated the development and application of a similar program in our environment, but adapted to Latin American conditions, planned on education and the extensive use of telecommunication tools in order to extend the scope of monitoring with the limited resources available.
It was developed jointly by the Cardiovascular Foundation of Colombia and the Universidad Pontificia Bolivariana, Bucaramanga branch.
This program was endorsed by the ethics committee of the FCV
PROMESA Home Monitoring Program:
Participating parents were given training and equipment for monitoring at home, always with the support of nursing, psychology and cardiology.
70% of the patients who participated in outpatient monitoring managed to reach the second stage of surgery, which was remarkable considering the high degree of complexity of heart disease aggravated by the COVID pandemic, in addition to the socioeconomic difficulties of our country.
The average number of days of follow-up per patient was 217 days, on average each patient recorded 486 oximetry tests, 113 weights and 167 intake records.
A total of 1,381 calls were made in routine follow-up, with an average of 77 per patient, where alarm symptoms were identified in 984.
There were 550 successful video calls and 102 face-to-face controls.
A total of 2,382 alerts were verified and 40 of these required hospitalization to handle the alert, in many cases avoiding serious complications.
The PROMESA project, with its adaptations and despite the limitations, including the COVID19 pandemic, managed to take about 70% of the patients to the second intervention, and also allowed continuous guidance in various aspects, as can be demonstrated with a 100% of the patients complied with the complete basic vaccination schedule, another positive aspect was the possibility of maintaining emotional support measures for parents or caregivers through the various telecommunication resources used.
Currently, the home monitoring and education program continues to be active as part of the Congenital and Pediatric Cardiology service of the FCV and after a few months of restarting a new cohort, it already has 25 patients under follow-up.
Conclusions:
The PROMESA project is a pioneer of its kind in Latin America and is an innovative solution to provide support to children and their families during complex phases of the management of congenital heart disease that they suffer from, demonstrating that this type of program does not only occur in countries of the first world, here you can too!
