Résumé
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease resulting to progressive muscle paralysis. Speech therapy care is necessary as soon as the first bulbar signs appear, especially articulation, phonation and swallowing disorders. However, due to the complexity of the disease, some speech therapists may ask themselves how to adapt the therapy. A protocol of recommendations for speech therapy care for ALS patients at different stages of the disease would help speech therapists to better apprehend this therapy. Method: two questionnaires were developed, with questions relating to the different axes of speech therapy care for patients with ALS. The first questionnaire was diffused and sent to as many speech therapists as possible via the Internet. The second questionnaire was proposed to ALS patients followed at the reference center in Montpellier in the form of semi-directed interviews. Results: 228 speech therapists answered the first questionnaire and 22 patients answered the second. The results highlighted the apprehension and difficulties that speech therapists may encounter in the care of patients with ALS, such as a lack of knowledge regarding some disorders or areas of care. Swallowing is an area that is not often addressed in the follow-up of patients, although it is a vital issue and should be considered a priority from the beginning of the follow-up. Conclusion: in view of the results obtained, a support document for speech therapy follow-up has been developed and will be distributed and made available to speech therapists. For each of stage of the disease, this support includes the different axes of work necessary for follow-up of patients and will help speech therapists to adapt it according to the evolution of the disorders.