A Retrospective Review to Evaluate the Demographics and Management Profile of Patients with Amyotrophic Lateral Sclerosis Attending a Multidisciplinary Clinic

Abstract

Introduction: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with heterogeneous age of onset, symptoms, topography, and progression. A multidisciplinary clinic (MDC) is the optimal form of healthcare delivery. We aimed to assess the demographic characteristics of, and the healthcare delivery to, patients with ALS attending an ALS MDC. Methods: A retrospective chart review of 82 patients attending our MDC was conducted. Results: Sixty percent of patients were male. Spinal-onset ALS was most common, had earlier onset, and occurred more in males. Median time from symptom onset to initial MDC visit was 18 months. More prevalent was the use of riluzole than edaravone. Percutaneous endoscopic gastrostomy (PEG) improved patient weight change (p=0.026). Conclusions: Our patient cohort further confirms observed demographic trends. More should be done to identify barriers that delay referral to specialist services. Multidisciplinary care helps capture disease characteristics and progression. PEG placement reduces weight loss and should be pursued earlier. MDCs should characterize their patient populations to evaluate, and further optimize, healthcare delivery.