Gary L Pattee1, Emily K Plowman2, Kendrea L Focht Garand3, John Costello4, Benjamin Rix Brooks5, James D Berry6, Richard A Smith7, Nazem Atassi6, Jennifer L Chapin2, Yana Yunusova8, Courtney E McIlduff9, Eufrosina Young10, Eric A Macklin11, Eduardo R Locatelli12, Vincenzo Silani13, Daragh Heitzman14, James Wymer15, Stephen A Goutman16, Deborah F Gelinas17, Bridget Perry4, Paige Nalipinski18, Kaila Stipancic4, Meghan O'Brien4, Stacey L Sullivan18, Erik P Pioro19, Gisella Gargiulo20, Jordan R Green4. 1. Neurology Associates P.C, Lincoln, NE, U.S.A. 2. Department of Speech, Language and Hearing Sciences, University of Florida, Gainesville, FL, U.S.A. 3. Department of Speech Pathology and Audiology, University of South Alabama, Mobile, AL, U.S.A. 4. Speech and Feeding Disorders Lab, MGH Institute of Health Professions, Charlestown, MA, U.S.A., ALS Augmentative Communication Program, Boston Children's Hospital, Boston, MA, U.S.A. 5. Carolinas Medical Center, Charlotte, NC, U.S.A. 6. MGH Department of Neurology, Boston, MA, U.S.A. 7. Center for Neurologic Study, San Diego, CA, U.S.A. 8. Department of Speech-Language Pathology, University of Toronto, Toronto, ON, CANADA. 9. Beth Israel Deaconess Medical Center, Boston, MA, U.S.A. 10. State University of New York, Department of Neurology, Syracuse, NY, U.S.A. 11. MGH Biostatistics Center, Boston, MA, U.S.A. 12. Holy Cross Hospital, Department of Neurology, Fort Lauderdale, FL, U.S.A. 13. Istituto Auxologico Italiano, IRCCS, Department of Neurology and Laboratory of Neuroscience, Department of Pathophysiology and Transplantation, "Dino Ferrari" Center, Università degli studi di Milano, Milan 20122, Italy. 14. Texas Neurology, P.A, Dallas, TX, U.S.A. 15. University of Florida, Rehabilitation Science, Gainesville, FL, U.S.A. 16. University of Michigan, Department of Neurology, Ann Arbor, MI, U.S.A. 17. UNC Health Care, Chapel Hill, NC, U.S.A. 18. MGH Speech Language Pathology, Boston, MA, U.S.A. 19. Cleveland Clinic, Department of Neurology, Cleveland, OH, U.S.A. 20. National Scientific and Technical Research Council, Buenos Aires, Argentina.
Abstract
INTRODUCTION: Universally established comprehensive clinical bulbar scales objectively assessing disease progression in amyotrophic lateral sclerosis (ALS) are currently lacking. The goal of this working group project is to design a best practice set of provisional bulbar ALS guidelines, available for immediate implementation within all ALS clinics. METHODS: ALS specialists across multiple related disciplines participated in a series of clinical bulbar symposia, intending to identify and summarize the currently accepted best practices for the assessment and management of bulbar dysfunction in ALS Results: Summary group recommendations for individual speech, Augmentative and Alternative Communication (AAC), and swallowing sections were achieved, focusing on the optimal proposed level of care within each domain. DISCUSSION: We have identified specific clinical recommendations for each of the 3 domains of bulbar functioning, available for incorporation within all ALS clinics. Future directions will be to establish a formal set of bulbar guidelines through a methodological and evidence-based approach. Muscle Nerve 59:531-531, 2019.
INTRODUCTION: Universally established comprehensive clinical bulbar scales objectively assessing disease progression in amyotrophic lateral sclerosis (ALS) are currently lacking. The goal of this working group project is to design a best practice set of provisional bulbar ALS guidelines, available for immediate implementation within all ALS clinics. METHODS: ALS specialists across multiple related disciplines participated in a series of clinical bulbar symposia, intending to identify and summarize the currently accepted best practices for the assessment and management of bulbar dysfunction in ALS Results: Summary group recommendations for individual speech, Augmentative and Alternative Communication (AAC), and swallowing sections were achieved, focusing on the optimal proposed level of care within each domain. DISCUSSION: We have identified specific clinical recommendations for each of the 3 domains of bulbar functioning, available for incorporation within all ALS clinics. Future directions will be to establish a formal set of bulbar guidelines through a methodological and evidence-based approach. Muscle Nerve 59:531-531, 2019.
Authors: Panying Rong; Yana Yunusova; Marziye Eshghi; Hannah P Rowe; Jordan R Green Journal: Amyotroph Lateral Scler Frontotemporal Degener Date: 2019-11-07 Impact factor: 4.092