Katharine Nicholson1, Alyssa Murphy1, Erin McDonnell2, Jordan Shapiro3, Ericka Simpson4, Jonathan Glass5, Hiroshi Mitsumoto6, Dallas Forshew7, Robert Miller7, Nazem Atassi1. 1. Harvard Medical School, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital, 165 Cambridge St, Suite 600, Boston, Massachusetts, 02114, USA. 2. Massachusetts General Hospital Biostatistics Center, Boston, Massachusetts, USA. 3. Department of Management Science and Engineering, Stanford University, Stanford, California, USA. 4. Department of Neurology, Houston Methodist Neurological Institute, Houston Methodist Hospital, Houston, Texas, USA. 5. Department of Neurology, Emory University School of Medicine, Atlanta, Georgia, USA. 6. Department of Neurology, Eleanor and Lou Gehrig MDA/ALS Research Center, Columbia University Medical Center, New York, New York, USA. 7. Department of Neurology, Forbes Norris MDA/ALS Research Center, California Pacific Medical Center, San Francisco, California, USA.
Abstract
INTRODUCTION: Symptomatic management is the main focus of ALS clinical care. We aim to report the prevalence of ALS-related symptoms and characterize self-reported symptomatic management. METHODS: A symptom management survey developed by the Muscular Dystrophy Association Clinical Research Network was completed by ALS registrants. Logistic regression identified potential predictors of symptom prevalence, severity, and treatment. RESULTS: A total of 567 ALS participants reported fatigue (90%), muscle stiffness (84%), and muscle cramps (74%) as most prevalent symptoms. Fatigue (18%), muscle stiffness (14%), and shortness of breath (12%) were most bothersome. Although fatigue was the most prevalent symptom, it was also least treated (10%). Neither location of care nor disease duration was associated with symptom prevalence, severity, or probability of receiving treatment. DISCUSSION: This large patient-reported symptom survey suggests that fatigue is the most prevalent, bothersome, and undertreated ALS symptom. Improving ALS symptom management is an unmet medical need and clinical trials of symptomatic treatments are needed. Muscle Nerve 57: 20-24, 2018.
INTRODUCTION: Symptomatic management is the main focus of ALS clinical care. We aim to report the prevalence of ALS-related symptoms and characterize self-reported symptomatic management. METHODS: A symptom management survey developed by the Muscular Dystrophy Association Clinical Research Network was completed by ALS registrants. Logistic regression identified potential predictors of symptom prevalence, severity, and treatment. RESULTS: A total of 567 ALSparticipants reported fatigue (90%), muscle stiffness (84%), and muscle cramps (74%) as most prevalent symptoms. Fatigue (18%), muscle stiffness (14%), and shortness of breath (12%) were most bothersome. Although fatigue was the most prevalent symptom, it was also least treated (10%). Neither location of care nor disease duration was associated with symptom prevalence, severity, or probability of receiving treatment. DISCUSSION: This large patient-reported symptom survey suggests that fatigue is the most prevalent, bothersome, and undertreated ALS symptom. Improving ALS symptom management is an unmet medical need and clinical trials of symptomatic treatments are needed. Muscle Nerve 57: 20-24, 2018.
Authors: Stephen A Goutman; Orla Hardiman; Ammar Al-Chalabi; Adriano Chió; Masha G Savelieff; Matthew C Kiernan; Eva L Feldman Journal: Lancet Neurol Date: 2022-03-22 Impact factor: 59.935
Authors: Susan L Hartmaier; Thomas Rhodes; Suzanne F Cook; Courtney Schlusser; Chao Chen; Steve Han; Neta Zach; Venkatesha Murthy; Shreya Davé Journal: Health Qual Life Outcomes Date: 2022-01-21 Impact factor: 3.186