Journal of Pain and Symptom Management
Volume 38, Issue 4 , Pages 546-553 , October 2009

Medical and Supportive Care Among People with ALS in the Months Before Death or Tracheostomy

  • Steven M. Albert, PhD, MSPH

      Affiliations

    • Department of Behavioral and Community Health Sciences, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
    • Department of Neurology, Eleanor & Lou Gehrig MDA/ALS Center, New York, New York, USA
    • Corresponding Author InformationAddress correspondence to: Steven M. Albert, PhD, MSPH, Department of Behavioral & Community Health Sciences, Graduate School of Public Health, University of Pittsburgh, A211 Crabtree, 130 DeSoto Street, Pittsburgh, PA 15261, USA.
    • ,
  • Adriene Whitaker, RN, MPH

      Affiliations

    • Department of Behavioral and Community Health Sciences, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
    • ,
  • Judith G. Rabkin, PhD, MPH

      Affiliations

    • Department of Neurology, Eleanor & Lou Gehrig MDA/ALS Center, New York, New York, USA
    • Department of Psychiatry, Columbia University Medical Center, New York, New York, USA
    • ,
  • Maura del Bene, NP-P, MS

      Affiliations

    • Department of Neurology, Eleanor & Lou Gehrig MDA/ALS Center, New York, New York, USA
    • ,
  • Toby Tider, MSW

      Affiliations

    • Department of Neurology, Eleanor & Lou Gehrig MDA/ALS Center, New York, New York, USA
    • ,
  • Ita O'Sullivan, NP-P, MS

      Affiliations

    • Department of Neurology, Eleanor & Lou Gehrig MDA/ALS Center, New York, New York, USA
    • ,
  • Hiroshi Mitsumoto, MD

      Affiliations

    • Department of Neurology, Eleanor & Lou Gehrig MDA/ALS Center, New York, New York, USA

,Accepted 10 December 2008.

References 

  1. Moss AH, Casey P, Stocking CB, et al. Home ventilation for amyotrophic lateral sclerosis patients: outcomes, costs and patient, family, and physician attitudes. Neurology. 1993;43:438–443
  2. Borasio GD, Gelinas D, Yanagisawa N. Mechanical ventilation in amyotrophic lateral sclerosis: a cross-cultural perspective. J Neurol. 1998;245(Suppl 2):S7–12
  3. Rabkin JG, Albert SM, Tider T, et al. Predictors and course of elective long-term mechanical ventilation: a prospective study of ALS patients. Amyotroph Lateral Scler Other Motor Neuron Disord. 2006;7:86–95
  4. Albert SM, Murphy PL, del Bene ML, Rowland LP. A prospective study of preferences and actual treatment choices in amyotrophic lateral sclerosis. Neurology. 1999;53(2):278–283
  5. Albert SM, Rabkin JR, del Bene M, et al. Wish to die in end-stage ALS. Neurology. 2005;65:68–74
  6. Rabkin JR, Albert SM, del Bene M, et al. Prevalence of depressive disorders and change over time in late-stage ALS. Neurology. 2005;62:62–67
  7. Del Bene ML, Albert SM, Brandis M, Mitsumoto H. Validation of vital capacity as the primary tool for predicting patient timing for formal palliative care intervention. Amyotroph Lateral Scler Other Motor Neuron Disord. 2003;4(Suppl 1):64–65
  8. Albert SM, Murphy PL, del Bene ML, Rowland LP. Prospective study of palliative care in ALS: choice, timing, outcomes. J Neurol Sci. 1999;169:108–113
  9. Cedarbaum J, Stambler N, Malta E, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169:13–21
  10. Spitzer R, Kroenke K, Williams J. Validation and utility of a self-report version of PRIME-MD: the PHQ Primary Care Study. JAMA. 1999;282:1737–1744
  11. Folstein M, Folstein SE, McHugh PR. “Mini-Mental State.” A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3):189–198
  12. Zarit SH, Reever K, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20:649–655
  13. Folkman S, Chesney M, Collette L, Boccellari A, Cooke M. Post-bereavement depressive mood and its pre-bereavement predictors in HIV+ and HIV- gay men. J Pers Soc Psychol. 1996;70:336–348
  14. Rabkin JG, Albert SM, Rowland LP, Mitsumoto H. How common is depression among ALS caregivers? A longitudinal study. Amyotroph Lateral Scler Other Motor Neuron Disord. 2008;14:1–8
  15. Mandler RN, Anderson FA, Miller RG, et al. ALS CARE Study Group. The ALS Patient Care Database: insights into end-of-life care in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord. 2001;2(4):203–208
  16. Laub M, Midgren B. Survival of patients on home mechanical ventilation: a nationwide prospective study. Respir Med. 2007;101:1074–1078
  17. Lo Coco D, Marchese S, La Bella V, Piccoli T, Lo Coco A. The amyotrophic lateral sclerosis functional rating scale predicts survival time in amyotrophic lateral sclerosis patients in invasive mechanical ventilation. Chest. 2007;132:64–69

 This research was supported by National Institute of Mental Health grant R01 MH62200.

PII: S0885-3924(09)00527-2

doi: 10.1016/j.jpainsymman.2008.11.013

Journal of Pain and Symptom Management
Volume 38, Issue 4 , Pages 546-553 , October 2009

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