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Amyotrophic lateral sclerosis (ALS) management relies on a multidisciplinary approach, as recommended by european guidelines. Our neuromuscular clinic offers a wide spectrum of medical expertise and therapists. We conducted a retrospective study of our clinical practice regarding ALS patients. We analyzed 47 patients (36M/11F, 40- 81yrs) in respect to good practice points, as stated by european guidelines, namely: Diagnosis, onset-to-diagnosis interval and respiratory/sleep-related symptoms at presentation. Multidisciplinary Care: We have a dedicated team that meets bi-monthly. Neuroprotective and Symptomatic Treatments: All patients received treatment with riluzole and they underwent a thorough assessment to tailor the best treatments for their symptoms. Genetic Testing: All eligible candidates underwent genetic testing and received counseling. Respiratory Care: Non-invasive ventilation was used by 83% of patients, via tracheostomy in 8.5%, and mechanical cough support was used by 60%. Communication Needs: Assistance was provided with alternative communication methods and speech augmentation techniques. Enteral Nutrition: 20 patients used percutaneous endoscopic gastrostomy. Palliative and End-of-Life Care: Patients, when needed, received specialized palliative care assessments. However, only a minority of patients had advanced life directives. It was observed a significant delay in ALS diagnosis, with patients exhibiting respiratory/ sleep-related symptoms at presentation. We also highlighted the importance of respiratory care and the significance of riluzole in ALS management. Furthermore, our study placed a strong emphasis on the advantages of a multidisciplinary approach in ALS care.
Pedroso et al. (Thu,) studied this question.