Aplicación de la telemedicina para la hospitalización domiciliaria de niños dependientes de ventilación mecánica

INTRODUCTION: Medical advances have involved the chronification of diseases that few decades ago had a poor prognosis. This has led to the emergence of a new type of pediatric patient, the technology-dependent children. These children are dependent on technology to ensure their survival, either temporarily or permanently, which can lead to a hospital confinement with the consequent impact on their health and also on the life of their families. The use of the information and communication technologies (ICT) could allow an early and permanent discharge of these patients to home, resulting in a family, social and economic benefits, but without compromising the quality of care (Principle of Efficiency). We present our experience after 8 years using a telemedical home care system for technology-dependent children. I. GENERAL CHARACTERISTICS OF THE STUDY This is a descriptive and analytical prospective clinical study in ventilatory-dependent children admitted to the Paediatric Intensive Care Unit (UCIP) at the Clinico University Hospital of Valencia (HCUV) from September 2007 to May 2015. The study was approved by the Ethics Committee HCUV. II. PATIENTS AND METHODS II.1. CRITERIA FOR INCLUSION OF PATIENTS All children treated in our hospital who met the following inclusion criteria were included, from September 2007 to May 2015: 1. Children belonging to the group of technology dependent children as rated by the OTA 1987 (mechanical ventilation dependent children). 2. Receive invasive mechanical ventilation through tracheostomy. 3. Signing of the informed consent of the UAIDP by parents or legal guardians. II.2. IMPLEMENTATION AND DEVELOPMENT OF THE TELEMEDICAL DOMICILIARY SYSTEM The unit was equipped with a telemedical system able to collect and transmit (in real time) the medical information generated by the child at home to the Hospital. In addition, the system allows the storage and process of this information and integrates a videoconferencing system and tele-auscultation to assess the child if needed at any time. II.3 STAFFING OF UAIDP The medical staff responsible for the comprehensive care of these patients is constituted by the staff of the PICU, which makes their work since the domiciliary telemedical control center at Hospital. Unit was provided with 3 nurses who assist them at home/school. A close collaboration with other specialists has been necessary to ensure an optimal multidisciplinary approach to these complex children. II.4 SPECIFIC TRAINING OF THE AUXILIARY STAFF, PARENTS AND CAREGIVERS. A basic feature of the project is the training of nurses as well as parents and caregivers. III. ANALYSIS OF RESULTS. QUALITY EVALUATION OF THE HEALTH CARE The main result was the creation and put into operation of the first Pediatric Domiciliary Intensive Care Unit with telemedical support for Technology Dependent Children in Spain. The results have been presented assessing their influence on the three dimensions of quality of care: Scientific and Technical Improvement, Improvement of the Perceived Quality and Improvement of Resources Management. III.1 IMPROVING OF SCIENTIFIC AND TECHNICAL QUALITY (DESCRIPTIVE ANALYSIS) III.1.1. PATIENTS INCLUDED A total of 12 ventilatory dependent children (100% of children attended in our center) were transfered to home care. Noteworthy about general data of patients at the time of admission to the UAIDP: • A third of patients (4/12) were premature with BPD, severe bronchial hyperresponsiveness and secondary pulmonary hypertension. • When discharged home: 5/12 had severe psychomotor retardation and other 3/12 Moderate. • Regarding the patients with congenital myopathy (5/12), four presented a permanent dependence on mechanical ventilation from the time of the infant. • 75% (9/12) were colonized by multiresistant hospital bacteria. • 66.6% were fed through gastrostomy at discharge. III.1.2. DELAY TIME BETWEEN DISCHARGE FROM PICU AND TRANSFER TO HOME All patients were transferred to conventional hospital ward after discharge from the PICU and before being transferred home. During that time (delay time), there was a transfer of responsibility of child care and the training of family members and caregivers of children was completed. The average delay was 24.6 ± 27.2 days (range 6-87 days). III.1.3. GEOGRAPHICAL LOCATION OF HOMES Patients from 6 different health areas have been included. The farthest home of a patient is located in Denia, at a distance of 112 km from the hospital. III.1.4. READMISSIONS An average of 5 children per month were attended throughout the study period. 37 readmissions (18 scheduled and 19 urgent) occurred. 78.4% of readmissions occurred in the first two years. The main cause of emergency admissions (42%) was a decompensation of the underlying disease. The average duration per admission was 7.7 days (range 1-35 days). III.1.5. UTILITY OF TELEMEDICINE IN MECHANICAL VENTILATION WEANING It has made progress in weaning patients through the use of Telemedicine, without any transfer to hospital or conducting additional tests. It has been achieved 5 full weaning. III.1.6. HIGH PROGRAM. Six children have been discharged from the UAIDP. Five of them due to improvement or stabilization and 1 to decease. The mean of length of stay at UAIDP has been 3.2 ± 1.8 years and age on discharge 4.9 ± 2.4 years. III.1.7. DECANNULATIONS. Four children were succesfully decannulated, the average of age at decannulation: 6.2 years (range 2.0 to 11.6 years). III.1.8. NEUROLOGICAL PROGRESS. At the end of the period of study, or patient discharge, we observed an improvement in the neurological status in all cases. Only 2/12 remained severe psychomotor retardation (with improvement on their previous situation) and 2 moderate. III.2. IMPROVING OF SCIENTIFIC AND TECHNICAL QUALITY (EVENTS ANALYSIS). A prospective registry was created to evaluate the utility of telemedical tool in the detection and management of intercurrent diseases or exacerbations of the underlying disease during the first 24 months of stay of each patient, from September 2007 to May 2015. A descriptive study of the registered variables and a study of correlations of the variables for each event with four main indicators of activity was carried out: life-threatening episode (EAV), need for hospitalization, avoided income, duration of the episode. Our telemedical system proved to be useful and reliable at decision-making for managing the events occurred in our patients. The incidences were detected by parents in 60% of cases. The TM detected almost 30% and was the key tool in monitoring 90% of them. The main cause was respiratory disease (67%). EAV in our patients are rare and unpredictable events. Their immediate assistance did not required expertise. The training provided to parents by the staff of the UAIDP allowed them to assist their children properly. TM has proven to be an effective tool in assisting these episodes. Incidences that have required hospital admission have been the most severe. Incidents defined as "avoided admission" also caused a greater deterioration in the patient, needed more intensity of treatment and diagnostic tests and the duration was longer, all indicative of their level of severity. Its behaviour were similar to incidents that required admission. III.3. IMPROVING QUALITY PERCEIVED All families agreed to participate in a wide satisfaction survey. The results of it notes that: - The training provided has been valued "very positively" by families and length of stay in the ward as "necessary" for transfer home. - The degree of satisfaction with the TM has been excellent: has not invaded their privacy, has improved the quality of life of children and decreased the stress of the family. Schooling is a key goal to get in these children because it allows to improve the development of their intellectual and psychosocial status, while normalizes family dynamics. The respiratory stability achieved and maintained by our patients, along with teacher training plan carried out by our Unit has allowed the schooling of all them. III.4. IMPROVEMENT IN RESOURCE MANAGEMENT III.4.1. HEALTHCARE INDICATORS The permanent stay at the home of mechanical ventilation dependent children, optimizes health resources of intensive care units, improving their indicators. III.4.2. STAFF MANAGEMENT An efficient management of human resources assigned to the Unit based on data obtained by telemedicine, allowed a reduction in costs compared to other healthcare solutions offered to these families. III.4.3. STAY AT HOME The transfer of all patients was definitive, staying at home 98.4% of the total time from the hospital discharge. Being urgent hospitalization time less than 1% of the total. III.4.4. EVOLUTION OF EMPLOYMENT OF PARENTS Hospital admission seriously affected the employment status of the parents. UAIDP admission improved this situation significantly, almost getting a normalization after schooling. The patient's discharge of UAIDP did not change the employment situation. CONCLUSION: TM has enabled us to transfer dependent children safely and permanently to home, achieving great progress in their care and improving their quality of life and their families.