Health Care Utilization

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Lead Author(s): 

Jonathan S. Kirschner, MD, RMSK
Se Won Lee, MD

Supporting Author(s): 

Sylvia I. Watkins-Castillo, PhD

The diagnosis of MND is made from the physician's interpretation of patient’ symptoms, while using selective diagnostic tests to confirm the diagnosis and rule out  other mimicking conditions like spinal stenosis, cervical myelopathy or peripheral neuropathy. Diagnostic tests may include an electrodiagnostic evaluation, lumbar puncture and MRIs of the spine  and occasionally the brain. As there is currently no definitive cure for motor neuron disease, supportive care and prevention of unnecessary complications is the mainstay of management. Supportive care includes physical, occupational and speech therapy, respiratory care, nutritional and psychological support. Multidisciplinary care in a specialized center has been shown to provide superior care with slightly better survival in patients with ALS.1, Care is provided primarily at outpatient clinics, however, patients with debilitating symptoms require hospital admissions that are often lengthy and costly.2 Palliative care is required at the advanced stages of ALS.


In 2013, 74,200 health care visits included a diagnosis of a motor neuron disorder. Because of the small number, the specific cause of the disorder could not be identified, and only hospital discharges and ED visits were of sufficient size to be included. An equal number of males and females were included, with the diagnosis more common among the aging population. Those 65 and over accounted for 60% of motor neuron disorder diagnoses, and ages 45 to 64 another 30%. Only hospital discharges were available by race/ethnicity, with non-Hispanic whites accounting for 74% of the diagnoses, compared to being 62% of the population. Geographic region in the US was not a major factor. (Reference Table T6B.1.1 PDF CSV; Table 6B.1.2 PDF CSV; Table 6B.1.3 PDF CSV; and Table 6B.1.4 PDF CSV)

Health Care Resources                

As previously noted, only discharges/visits from/to the hospital and emergency department had sufficient numbers to be analyzed; the two sites were evenly represented. (Reference Table 6B.1.5 PDF CSV)

  • 1. Miller RG, Jackson CE, Kasarskis EJ, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009;73(15):1218-26. doi:  10.1212/WNL.0b013e3181bc0141.
  • 2. Lechtzin N, Wiener CM, Clawson L, et al. Hospitalization in amyotrophic lateral sclerosis: causes, costs, and outcomes. Neurology 2001;56(6):753-7.


  • Fourth Edition

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