Managing patients with advanced amyotrophic lateral sclerosis (ALS) has long been a challenge for the healthcare system. Thanks to the TELE-SLA project, led by Dr Véronique Danel, neurologist at the Lille University Hospital ALS Center, and the Santélys Association, significant progress has been made in supporting these patients at home.
Launched with the aim of setting up and evaluating a system of scheduled teleconsultations, this project has enabled hospital-at-home (HA H) patients to benefit from optimal medical follow-up while limiting the constraints associated with travel.
This program was a double winner of the Foundation's calls for projects:
Laureate of the Ateliers en e-santé in 2019 and Laureate of the call for projects in SHS with the project "Accompagnement en télémédecine : étude sur l'évaluation des enjeux éthiques", led by Alain Loute, Professor of Ethics at the Université Catholique de Louvain, and Jean-Philippe Cobbaut, Professor of Health Ethics at the Université Catholique de Lille. Supported by from FE-IRCEM and Pfizer Innovation France, the program quickly proved its worth.
A real impact on the care pathway
The results of the experiment are indisputable:
✅ Improved comfort for patients and their caregivers thanks to enhanced medical monitoring without unnecessary travel.
✅ Better coordination between specialists, attending physicians and HAH teams.
✅ Reduced re-hospitalization and transport, optimizing the organization of care.
Today, teleconsultation has become a pillar of the ALS patient care pathway. This innovative system ensures continuity of medical expertise, promotes knowledge transfer and respects patients' needs and wishes. In this context, a first study day was held in November 2024.
"A call for projects from the Fondation Maladies Rares and funding from FE IRCEM have enabled us to set up teleconsultations and train teleconsultation nurses in the pathology. Given the need to improve management of advanced ALS, and studies suggesting that good quality care at the end of life depends on advance planning for management of vital emergencies based on the patient's advance directives, access to advanced therapies and the desired place of death, this project has demonstrated that telemedicine can be a relevant modality: it enables the ALS Center's expertise to be maintained for patients who can no longer travel, to continue medical surveillance in liaison with the attending physician, and to support medical and nursing teams at home. At the end of the project, teleconsultations remain highly appreciated by patients and their carers, and have been included in the ALS Reference Centre's care offering for ALS patients. The criteria for inclusion in the teleconsultation system remain unchanged: patients undergoing palliative care by AHH. Ultimately, the key words in the results of the experiment are: satisfaction, comfort, support, access and continuity of care, expertise, innovation, digital health, knowledge transfer, respect for integrity and quality".
DR Véronique Danel
This success story demonstrates that telemedicine is much more than an alternative: it is a lever for innovation that improves patient care and optimizes the organization of care. The TELE-SLA project paves the way for new perspectives in the care of chronic and advanced pathologies.