Time to Diagnosis and Factors Affecting Diagnostic Delay in Amyotrophic Lateral Sclerosis

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Danielle Richards, DO
John Morren, MD
Erik Pioro, MD, PHD


At present, disease-modifying treatments for Amyotrophic Lateral Sclerosis (ALS) remain limited, with early intervention crucial for maximum potential benefit. A majority of patients will develop dysphagia during the course of their disease, and most will die within three years of the first symptom onset due to respiratory complications. Therefore, early diagnosis is vital to ensure the patient receives appropriate multidisciplinary care and resultant improved longevity as well as quality of life. However, a recent literature review found that ALS patients experience a diagnostic delay of 10–16 months from symptom onset. This chapter examines the factors that contribute to diagnostic delay and potential interventions to decrease time to diagnosis.


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Chapter 2