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The outgrowth and quick development in telecommunication technologies have opened new opportunities for diagnosing many diseases, which are life-threatening, for patients who are in rural areas and districts far away from the city, and where there are no specialists. Critical and life-threatening diseases, in which the patient cannot wait until going to a central hospital, or specialist, need to benefit from the advantages of telecommunication technologies to save the patient’s life. The segment of pediatric patients represents a significant number of patients and children represent the country’s present and bright future, so we must focus on the importance of diagnosing and treating their diseases early and on a time using the ways and means available to protect their lives from risks. Designing a tele-pediatric system for monitoring such cases can be vital and efficient in saving those babies’ lives and protecting them from significant risks of disability and even death that happen if their defects are not diagnosed and treated soon after birth. This project aimed to design a tele-pediatric system, using webpages at both transmitting and receiving sites and connected to a united database and then linked with the Sudan University of Science and Technology’s Network for testing its efficiency and effectiveness. If this project is applied; it will contribute to saving the baby’s life and raise the overall health care.
The outgrowth and quick development in telecommunication technologies have opened new opportunities for diagnosing many diseases, which are life-threatening, for patients who are in rural areas and districts far away from the city, and where there are no specialists. Critical and life-threatening diseases, in which the patient cannot wait until going to a central hospital, or specialist, need to benefit from the advantages of telecommunication technologies to save the patient’s life. The segment of pediatric patients represents a significant number of patients and children represent the country’s present and bright future, so we must focus on the importance of diagnosing and treating their diseases early and on a time using the ways and means available to protect their lives from risks. Designing a tele-pediatric system for monitoring such cases can be vital and efficient in saving those babies’ lives and protecting them from significant risks of disability and even death that happen if their defects are not diagnosed and treated soon after birth. This project aimed to design a tele-pediatric system, using webpages at both transmitting and receiving sites and connected to a united database and then linked with the Sudan University of Science and Technology’s Network for testing its efficiency and effectiveness. If this project is applied; it will contribute to saving the baby’s life and raise the overall health care.
Background Remote consultations (RCs) using videoconferencing was recommended by the General Medical Council as the method for clinicians to provide patient consultations during the COVID-19 pandemic. Facilitating this while providing high-quality care depends on the usability and acceptability of the technology. Objective This project aimed to investigate parents’ experiences of using videoconferencing technology for real-time RCs with children who had congenital heart defects during the COVID-19 pandemic lockdown. Methods This study’s design was quasi-experimental and was underpinned by the Unified Theory of Acceptance and Use of Technology model that seeks to explain and predict an individual’s intention to use a technology. Parents were informed of this study by the medical team, posters were made available in the wards and clinics, and leaflets were left for browsing. Clinician screening of potential participants led to the identification of 33 children and parents who were enrolled on this study. The intervention was a web-based RC by medical staff using a secure, interactive videoconferencing platform (Pexip). Each child and their mother or father received 8 RCs with the same specialist doctor or nurse. Measurements were taken using web-based questionnaires pre and post consultation at the first, middle, and last events; questions were focused on the acceptability, usability, and clinical applicability of RCs. Parents’ experiences were explored using recorded interviews and analyzed thematically. Results In total, 29 children aged 4‐1052 (mean 95, SD 191.14) days completed the project, receiving a total of 189 RCs as part of their routine care. Parents’ prior experience of consultation via videoconference was low; however, as time progressed, their use and acceptance of the technology increased. The intervention was warmly received by all parents who found the face-to-face component particularly useful for discussion with their child’s medical team. Furthermore, parents noted the savings on time, money, and childcare. Conclusions While in-person consultations are considered the gold standard of patient care, increasing pressures on health services and staff reduce availability. Given the ease of access and additional benefits experienced by parents and their children, it is proposed that hybrid models of consultation and care provision are equal, if not superior, to in-person consultations in the management of children with severe congenital heart defects while reducing costs and pressure on the health service and parents.
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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