Skip to main content
AAN.com

Abstract

Objective: As ALS progresses, extensive supportive care is required, including multidisciplinary outpatient care and hospitalization. The authors studied the causes, health care utilization, and outcomes for hospitalized patients with ALS.
Methods: With use of the 1996 Nationwide Inpatient Sample, an administrative database representing 20% of U.S. hospitals, 1,600 hospitalizations in patients with ALS were identified and compared with 5,364,728 non-ALS hospitalizations.
Results: The most common concurrent diagnoses in patients with ALS were dehydration and malnutrition (574 patients, 36%), pneumonia (507 patients, 32%), and respiratory failure (398 patients, 25%). Only 38% of patients with ALS were discharged to home without home health care compared with 73% of patients with non-ALS. Fifteen percent of patients with ALS died in the hospital compared with 3% of non-ALS patients. The average length of hospital stay and charges were greater for patients with ALS than for non-ALS patients (8.4 days and $19,810 for ALS patients and 5.4 days and $11,924 for non-ALS patients). Mortality was significantly associated with emergency room admission (versus nonemergency admission; OR = 1.60), increasing age (per year; OR = 1.03), respiratory failure (OR = 3.37), and pneumonia (OR = 2.02) (p < 0.01 for all comparisons).
Conclusions: Patients with ALS have lengthy and costly hospital admissions, a high in-hospital mortality rate, and few routine discharges. Recognition of the issues that precipitate hospitalization may allow development of preventive strategies.

Get full access to this article

View all available purchase options and get full access to this article.

References

1.
Mulder DW, Howard FM. Patient resistance and prognosis in ALS. Mayo Clin Proc . 1976; 51: 537–541.
2.
Chancellor AM, Warlow CP. Adult onset motor neuron disease: worldwide mortality, incidence and distribution since 1950. J Neurol Neurosurg Psychiatry . 1992; 55: 1106–1115.
3.
Moss AH, Casey P, Stocking CB, Roos RP, Brooks BR, Siegler M. Home ventilation for ALS patients: outcomes, costs, and patient, family, and physician attitudes. Neurology . 1993; 43: 438–443.
4.
Cazzoli PA, Oppenheimer EA. Home mechanical ventilation for ALS: nasal compared to tracheostomy-intermittent positive pressure ventilation. J Neurol Sci . 1996; 139 (suppl): 123–128.
5.
Moss AH, Oppenheimer EA, Casey P, et al. Patients with ALS receiving long-term mechanical ventilation. Advance care planning and outcomes. Chest . 1996; 110: 249–255.
6.
Klein LM, Forshew DA. The economic impact of ALS. Neurology . 1996; 47 (suppl 2): S126–S129.
7.
U.S. Department of Health and Human Services. International classification of diseases. 9th rev. Clinical modification. 4th ed. DHHS publication no. (PHS)91–1260. Washington, DC: US Government Printing Office, 1991.
8.
World Health Organization. International classification of diseases and related health problems, vol 2. 10th rev. Geneva: World Health Organization, 1993.
9.
Tandan R, Bradley WG. ALS. Clinical features, pathology, and ethical issues in management. Ann Neurol . 1985; 18: 271–280.
10.
Rosati G, Pinna L, Granieri E, et al. Studies on epidemiological, clinical and etiological aspects of ALS disease in Sardinia, Southern Italy. Acta Neurol Scand . 1977; 55: 231–244.
11.
Kurtzke JF. Epidemiology of ALS. In: Rowland LP, ed. Human motor neuron diseases. New York: Raven Press, 1982: 281–302.
12.
US Department of Commerce. United States Census Bureau. On-line. Available at www.census.gov. Accessed March 30, 2000.
13.
Charchaflie RJ, Fernandez LB, Perec CJ, Gonzalez E, Marzi A. Functional studies of the parotid and pancreas glands in ALS. J Neurol Neurosurg Psychiatry . 1974; 37: 863–867.
14.
Kasarskis EJ, Berryman S, Vanderleest JG, Schneider AR, McClain CJ. The nutritional status of patients with ALS: relation to the proximity of death. Am J Clin Nutr . 1996; 63: 130–137.
15.
Malthus-Vliegen LM, Louwerse LS, Merkus MP, Tytgat GN, Vianney de Jong JM. Percutaneous endoscopic gastrostomy in patients with ALS and impaired pulmonary function. Gastrointest Endosc . 1994; 40: 463–469.
16.
Fallat RJ, Jewitt B, Bass M, Kamm B, Norris FH. Spirometry in ALS. Arch Neurol . 1979; 36: 74–80.
17.
Miller RG, Anderson FA, Bradley WG, et al., and ALS CARE Study Group. The ALS patient care database. Goals, design, and early results. Neurology 2000;54:53–57.
18.
Jollis JG, Ancukiewicz M, DeLong ER, Pryor DB, Muhlbaler, Mark DB. Discordance of databases designed for claims payment versus clinical information systems. Ann Intern Med 1993;119:844–850.
19.
Romano PS, Roos LL, Luft HS, Jollis JG, Doliszny K, and Ischemic Heart Disease Patient Outcomes Research Team. A comparison of administrative versus clinical data: coronary artery bypass surgery as an example. J Clin Epidemiol 1994;47:249–260.
20.
Whittle J, Steinberg E, Anderson GF, Herbert R. Accuracy of Medicare claims data for estimation of cancer incidence and resection rates among elderly Americans. Med Care . 1991; 29: 1226–1236.
21.
Traynor BJ, Codd MB, Corr B, Forde C, Frost E, Hardiman OM. Clinical features of ALS according to the El Escorial and Airlie House diagnostic criteria: a population-based study. Arch Neurol . 2000; 57: 1171–1176.
22.
Albert SM, Murphy PL, Del Bene ML, Rowland LP. A prospective study of preferences and actual treatment choices in ALS. Neurology . 1999; 53: 278–283.
23.
Cummings J, Hughes SL, Weaver F. Cost-effectiveness of VA hospital-based home care: a randomized clinical trial. Arch Intern Med . 1990; 150: 1274.
24.
McCusker J, Stoddard AM. Effects of an expanding home care program for the terminally ill. Med Care . 1987; 25: 373–385.
25.
Stessman J, Ginsberg G, Hammerman-Rozenberg R, et al. Decreased hospital utilization by older adults attributable to a home hospitalization program. J Am Geriatr Soc . 1996; 44: 591–598.
26.
Landi F, Gambassi G, Pola R, et al. Impact of integrated home care services on hospital use. J Am Geriatr . 1999; 47: 1430–1434.

Information & Authors

Information

Published In

Neurology®
Volume 56Number 6March 27, 2001
Pages: 753-757
PubMed: 11274310

Publication History

Received: August 28, 2000
Accepted: December 2, 2000
Published online: March 27, 2001
Published in print: March 27, 2001

Permissions

Request permissions for this article.

Authors

Affiliations & Disclosures

N. Lechtzin, MD, MHS
From the Division of Pulmonary and Critical Care, Department of Medicine (Drs. Lechtzin, Wiener, and Diette), and Department of Neurology (Dr. Chaudhry and L. Clawson), Johns Hopkins University School of Medicine, and Department of Epidemiology (Dr. Diette), Johns Hopkins University School of Hygiene and Public Health, Baltimore, MD.
C. M. Wiener, MD
From the Division of Pulmonary and Critical Care, Department of Medicine (Drs. Lechtzin, Wiener, and Diette), and Department of Neurology (Dr. Chaudhry and L. Clawson), Johns Hopkins University School of Medicine, and Department of Epidemiology (Dr. Diette), Johns Hopkins University School of Hygiene and Public Health, Baltimore, MD.
L. Clawson, MSN, CRNP
From the Division of Pulmonary and Critical Care, Department of Medicine (Drs. Lechtzin, Wiener, and Diette), and Department of Neurology (Dr. Chaudhry and L. Clawson), Johns Hopkins University School of Medicine, and Department of Epidemiology (Dr. Diette), Johns Hopkins University School of Hygiene and Public Health, Baltimore, MD.
V. Chaudhry, MD, FRCP
From the Division of Pulmonary and Critical Care, Department of Medicine (Drs. Lechtzin, Wiener, and Diette), and Department of Neurology (Dr. Chaudhry and L. Clawson), Johns Hopkins University School of Medicine, and Department of Epidemiology (Dr. Diette), Johns Hopkins University School of Hygiene and Public Health, Baltimore, MD.
G. B. Diette, MD, MHS
From the Division of Pulmonary and Critical Care, Department of Medicine (Drs. Lechtzin, Wiener, and Diette), and Department of Neurology (Dr. Chaudhry and L. Clawson), Johns Hopkins University School of Medicine, and Department of Epidemiology (Dr. Diette), Johns Hopkins University School of Hygiene and Public Health, Baltimore, MD.

Notes

Address correspondence and reprint requests to Dr. N. Lechtzin, Division of Pulmonary and Critical Care Medicine, Johns Hopkins Hospital, 600 N. Wolfe St., Blalock 910, Baltimore, MD 21287; e-mail: [email protected]

Metrics & Citations

Metrics

Citation information is sourced from Crossref Cited-by service.

Citations

Download Citations

If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Select your manager software from the list below and click Download.

Cited By
  1. Healthcare Utilization and Supportive Care Timing in South Korean People Living With Amyotrophic Lateral Sclerosis: A Single-Center Retrospective Study, Journal of Clinical Neurology, 20, (2024).https://doi.org/10.3988/jcn.2023.0211
    Crossref
  2. Navigating Neurologic Illness: Skills in Neuropalliative Care for Persons Hospitalized with Neurologic Disease, Seminars in Neurology, 44, 05, (503-513), (2024).https://doi.org/10.1055/s-0044-1788723
    Crossref
  3. A Clinical Focus on Shared Decision Making in Clinical Practice When Providing Dysarthria and Dysphagia Services to Individuals With Amyotrophic Lateral Sclerosis, Perspectives of the ASHA Special Interest Groups, 9, 4, (1003-1015), (2024).https://doi.org/10.1044/2024_PERSP-23-00271
    Crossref
  4. Respiratory Care of the ALS Patient, Pulmonary Complications of Neuromuscular Disease, (243-269), (2024).https://doi.org/10.1007/978-3-031-65335-3_10
    Crossref
  5. Neuromuscular Disorders, Textbook of Neurointensive Care: Volume 1, (561-574), (2024).https://doi.org/10.1007/978-3-031-62220-5_33
    Crossref
  6. The role of lung volume recruitment therapy in neuromuscular disease: a narrative review, Frontiers in Rehabilitation Sciences, 4, (2023).https://doi.org/10.3389/fresc.2023.1164628
    Crossref
  7. Prognostic Value of Regular Nutritional Treatment in Patients With Amyotrophic Lateral Sclerosis, The Neurologist, 28, 3, (166-172), (2023).https://doi.org/10.1097/NRL.0000000000000460
    Crossref
  8. The economic evaluation of ALS care: quality and cost, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 24, 5-6, (502-513), (2023).https://doi.org/10.1080/21678421.2023.2176776
    Crossref
  9. Quantitative brainstem and spinal MRI in amyotrophic lateral sclerosis: implications for predicting noninvasive ventilation needs, Journal of Neurology, 271, 3, (1235-1246), (2023).https://doi.org/10.1007/s00415-023-12045-x
    Crossref
  10. Epidemiology and characteristics of emergency department utilization by patients with amyotrophic lateral sclerosis in Korea from 2016 to 2020: A nationwide study , Muscle & Nerve, 68, 4, (451-459), (2023).https://doi.org/10.1002/mus.27952
    Crossref
  11. See more
Loading...

View Options

Login options

Check if you have access through your login credentials or your institution to get full access on this article.

Personal login Institutional Login
Purchase Options

The neurology.org payment platform is currently offline. Our technical team is working as quickly as possible to restore service.

If you need immediate support or to place an order, please call or email customer service:

  • 1-800-638-3030 for U.S. customers - 8:30 - 7 pm ET (M-F)
  • 1-301-223-2300 for customers outside the U.S. - 8:30 - 7 pm ET (M-F)
  • [email protected]

We appreciate your patience during this time and apologize for any inconvenience.

View options

PDF and All Supplements

Download PDF and Supplementary Material

Full Text

View Full Text

Full Text HTML

View Full Text HTML

Media

Figures

Other

Tables

Share

Share

Share article link

Share