Why the study?
Congenital heart disease leads to multiple hospitalisations and outpatient visits, negatively impacting the quality of life and psychological profile of children and their families.
Does a home monitoring system improve quality of life and reduce anxiety for families of paediatric patients with congenital heart disease?
Does a home monitoring system improve quality of life and reduce anxiety for families of paediatric patients with congenital heart disease?
A home telemonitoring system for pediatric congenital heart disease patients is feasible, usable, and improves family well-being while reducing anxiety.
Congenital heart disease, the most frequent malformation at birth, is usually not fatal but leads to multiple hospitalisations and outpatient visits, with negative impact on the quality of life and psychological profile not only of children but also of their families. In this paper, we describe the entire architecture of a system for remotely monitoring paediatric/neonatal patients with congenital heart disease, with the final aim of improving quality of life of the whole family and reducing hospital admissions. The interesting vital parameters for the disease are ECG, heart rate, oxygen saturation, body temperature and body weight. They are collected at home using some biomedical sensors specifically selected and calibrated for the paediatric field. These data are then sent to the smart hub, which proceeds with the synchronisation to the remote e-Health care center. Here, the doctors can log and evaluate the patient’s parameters. Preliminary results underline the sensor suitability for children and infants and good usability and data management of the smart-hub technology (E@syCare). In the clinical trial, some patients from the U.O.C. Paediatric and Adult Congenital Cardiology- Monasterio Foundation are enrolled. They receive a home monitoring kit according to the group they belong to. The trial aims to evaluate the effects of the system on quality of life. Psychological data are collected through questionnaires filled in by parents/caregivers in self-administration via the gateway at the beginning and at the end of the study. Results highlight an overall improvement in well-being and sleep quality, with a consequent reduction in anxious and stressful situations during daily life thanks to telemonitoring. At the same time, users reported a good level of usability, ease of data transmission and management of the devices.
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Donati et al. (2021) studied this question.
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