Polyhandicap et Télémédecine

CONTEXT In France, difficulties and deficits in access to care for children with Profound Intellectual and Multiple Disabilities have been highlighted in scientific literature and reports. To improve follow-up of these children, a telemedicine program has been developed between five neuropediatric departments of the APHP and medico-social establishments in the Ile-de-France region. It was expected that these new forms of medical practice would improve access to care and quality of life for patients. However, the scientific literature suggests that certain precautions should be taken when deploying them. OBJECTIVES The aim of our intervention research was to support the deployment of teleconsultation systems in healthcare establishments. We made the general hypothesis that the expected benefits for children with multiple disabilities depend on the strategies put in place to legitimize its use institutionally, organizationally and functionally, on the level of acceptability, and on the added value that stakeholders derive from it. This hypothesis was tested by a multiscalar, multidisciplinary analysis (sociology, psychology, health economics and medicine) involving a team of neuropediatricians from APHP, a team from CESAP, and three teams of researchers from the Conservatoire National des Arts et Métiers. METHODS A participatory approach was adopted with the various stakeholders (children, families, caregivers, project leaders, associations managing the medical-social establishments and funding bodies). Different methodologies were used, depending on the nature of the data: analysis of interviews, armed observations in situ, econometric analysis using the "double differences" method, and using two matched data sources, those from the APHP enabling us to identify the population of children with Profound Intellectual and Multiple Disabilities, and those from the SNDS, enabling us to characterize their care pathways over several years. MAIN RESULTS The results of our multiscale analysis confirm, through qualitative data, that the use of teleconsultation in the medical care of children with Profound Intellectual and Multiple Disabilities improves their access to care and the quality of their medical follow-up. However, its deployment may encounter obstacles and difficulties. Many factors contribute to the success of its implementation, as well as to the stabilization of its use over time, given that this device does not always become a "routine" instrument for professionals. OUTCOMES OR POTENTIAL IMPACTS This intervention research invites public authorities and project leaders practicing or wishing to develop telemedicine to consider several points to watch out for, and to think about the introduction of telemedicine practices in terms of their links with existing practices. The introduction of these socio-technical tools must consider what is already there and be accompanied by the identification and monitoring of the resulting reconfigurations. These elements may lead to changes or adjustments in projects, particularly when the practices developed are no longer serving patients' care pathways and/or are unsustainable for professionals.