European Journal of Internal Medicine
Volume 20, Issue 4 , Pages 355-358 , July 2009

Managing patients with amyotrophic lateral sclerosis

Received 26 June 2008 ,Revised 28 August 2008 ,Accepted 3 September 2008.

References 

  1. Charcot JM. Sclérose des cordons latéraux de la moelle epinierè chez une femme hysterique, atteinte de contracture permanente des quatre membres. Bull Soc Med Hopit Paris. 1865;24–35
  2. Mitchell JD, Borasio GD. Amyotrophic lateral sclerosis. Lancet. 2007;369:2031–2041
  3. Borasio GD, Sloan R, Pongratz DE. Breaking the news in amyotrophic lateral sclerosis. J Neurol Sci. 1998;160(Suppl 1):S127–133
  4. Miller RG, Mitchell JD, Lyon M, Moore DH. Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database Syst Rev. 2007;1:CD001447
  5. Bensimon G, Lacomblez L, Delumeau JC, et al. A study of riluzole in the treatment of advanced stage or elderly patients with amyotrophic lateral sclerosis. J Neurol. 2002;249:609–615
  6. Bourke SC, Tomlinson M, Williams TL, Bullock RE, Shaw PJ, Gibson GJ. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial. Lancet Neurol. 2006;5:140–147
  7. Miller RG, Rosenberg JA, Gelinas DF, et al. Practice parameter: the care of the patient with amyotrophic lateral sclerosis (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology: ALS Practice Parameters Task Force. Neurology. 1999;52:1311–1323
  8. Fitting JW, Paillex R, Hirt L, et al. Sniff nasal pressure: a sensitive respiratory test to assess progression of amyotrophic lateral sclerosis. Ann Neurol. 1999;46:887–893
  9. Lyall RA, Donaldson N, Polkey MI, Aebischer P, Schluep M. Respiratory muscle strength and ventilatory failure in amyotrophic lateral sclerosis. Brain. 2001;124:2000–2013
  10. Hayashi H, Oppenheimer EA. ALS patients on TPPV: totally locked-in state, neurologic findings and ethical implications. Neurology. 2003;61:135–137
  11. Moss AH, Casey P, Stocking CB, Roos RP, Brooks BR, Siegler M. Home ventilation for amyotrophic lateral sclerosis: outcomes, costs, and patient, family, and physician attitudes. Neurology. 1993;43:438–443
  12. Cazzolli PA, Oppenheimer EA. Home mechanical ventilation for amyotrophic lateral sclerosis: nasal compared to tracheostomy-intermittent positive pressure ventilation. J Neurol Sci. 1996;139:123–128
  13. Vaszar LT, Weinacker AB, Henig NR, Raffin TA. Ethical issues in the long-term management of progressive degenerative neuromuscular diseases. Semin Respir Crit Care Med. 2002;23:307–314
  14. Desport JC, Preux PM, Truong TC, Vallat JM, Sautereau D, Couratier P. Nutritional status is a prognostic factor for survival in ALS patients. Neurology. 1999;53:1059–1063
  15. Mazzini L, Corra T, Zaccala M, Mora G, Del Piano M, Galante M. Percutaneous endoscopic gastrostomy and enteral nutrition in amyotrophic lateral sclerosis. J Neurol. 1995;242:695–698
  16. Desport JC, Preux PM, Truong CT, Courat L, Vallat JM, Couratier P. Nutritional assessment and survival in ALS patients. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:91–96
  17. Mathus-Vliegen LM, Louwerse LS, Merkus MP, Tytgat GN, Vianney de Jong JM. Percutaneous endoscopic gastrostomy in patients with amyotrophic lateral sclerosis and impaired pulmonary function. Gastrointest Endosc. 1994;40:463–469
  18. Kasarskis EJ, Scarlata D, Hill R, Fuller C, Stambler N, Cedarbaum JM. A retrospective study of percutaneous endoscopic gastrostomy in ALS patients during the BDNF and CNTF trials. J Neurol Sci. 2002;169:118–125
  19. Thornton FJ, Fotheringham T, Alexander M, Hardiman O, McGrath FP, Lee MJ. Amyotrophic lateral sclerosis — enteral nutrition provision: endoscopic or radiologic gastrostomy?. Radiology. 2002;224:713–717
  20. Chio A, Galletti R, Finocchiaro C, et al. Percutaneous radiological gastrostomy: a safe and effective method of nutritional tube placement in advanced ALS. J Neurol Neurosurg Psychiatry. 2004;75:645–647
  21. Andersen PM, Borasio GD, Dengler R, et al. EFNS Task Force on management of Amyotrophic Lateral Sclerosis: guidelines for diagnosing and clinical care of patients and relatives. Eur J Neurol. 2005;12:921–938
  22. Leigh PN, Abrahams S, Al-Chalabi A, et al. The management of motor neurone disease. J Neurol Neurosurg Psychiatry. 2003;74(Suppl 4):iv32–47
  23. Newall AR, Orser R, Hunt M. The control of oral secretions in bulbar ALS/MND. J Neurol Sci. 1996;139(Suppl):43–44
  24. Verma A, Steele J. Botulinum toxin improves sialorrhea and quality of living in bulbar amyotrophic lateral sclerosis. Muscle Nerve. 2006;34:235–237
  25. Borasio G, Voltz R. Palliative care in amyotrophic lateral sclerosis. J Neurol. 1997;244:S11–17
  26. Kurland LT, Mulder DW. Epidemiologic investigations of amyotrophic lateral sclerosis: 2. Familial aggregations indicative of dominant inheritance part II. Neurology. 1955;5:249–268
  27. Schiffer RB, Cash J, Herndon RM. Treatment of emotional lability with low-dosage tricyclic antidepressants. Psychosomatics. 1983;24:1094–1096
  28. Iannaccone S, Ferini-Strambi L. Pharmacologic treatment of emotional lability. Clin Neuropharmacol. 1996;19:532–535
  29. O'Brien T, Kelly M, Saunders C. Motor neuron disease: a hospice perspective. BMJ. 1992;304:471–473
  30. Kanaan N, Sawaya R. Nocturnal leg cramps. Clinically mysterious and painful — but manageable. Geriatrics. 2001;56(34):39–42
  31. Carter GT, Miller RG. Comprehensive management of amyotrophic lateral sclerosis. Phys Med Rehab Clin. 1998;9:271–284
  32. Marquardt G, Lorenz R. Intrathecal baclofen for intractable spasticity in amyotrophic lateral sclerosis. J Neurol. 1999;246:619–620
  33. Restivo DA, Lanza S, Marchese-Ragona E, Palmeri A. Improvement of masseter spasticity by botulinum toxin facilitates PEG placement in amyotrophic lateral sclerosis. Gastroenterology. 2002;123:1749–1750
  34. Krivickas LS. Exercise in neuromuscular disease. J Clin Neoromusc Dis. 2003;5:29–39
  35. Kilmer DD, McCrory MA, Wright NC, et al. The effect of a high resistance exercise program in slowly progressive neuromuscular disease. Arch Phys Med Rehabil. 1994;75:560–563
  36. Carter GT, Weiss MD, Lou JS, et al. Modafinil to treat fatigue in amyotrophic lateral sclerosis: an open label pilot study. Am J Hosp Palliat Care. 2005;22:55–59
  37. Francis K, Bach JR, DeLisa JA. Evaluation and rehabilitation of patients with adult motor neuron disease. Arch Phys Med Rehabil. 1999;80:951–963
  38. Brownlee A, Palovcak M. The role of augmentative communication devices in the medical management of ALS. Neurorehabilitation. 2007;22:445–450
  39. Kurt A, Nijboer F, Matuz T, Kubler A. Depression and anxiety in individuals with amyotrophic lateral sclerosis: epidemiology and management. CNS Drugs. 2007;21:279–291
  40. Veldink JH, Wokke JHJ, van der Wal G, Vianney de Jong JM, van den Berg LH. Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in The Netherlands. N Engl J Med. 2002;346:1638–1644
  41. Ganzini L, Johnston WS, McFarland BH, Tolle SW, Lee MA. Attitudes of patients with amyotrophic lateral sclerosis and their care givers toward assisted suicide. N Engl J Med. 1998;339:967–973
  42. Minkoff K, Bergman E, Beck AT, Beck R. Hopelessness, depression, and attempted suicide. Am J Psychiatry. 1973;130:455–459
  43. Beck AT, Brown G, Berchick RJ, Stewart BL, Steer RA. Relationship between hopelessness and ultimate suicide: a replication with psychiatric outpatients. Am J Psychiatry. 1990;147:190–195
  44. Appel SH. Euthanasia and physician-assisted suicide in ALS: a commentary. Am J Hosp Palliat Care. 2004;21:405–406
  45. Johnston M, Earll L, Mitchell E, Morrison V, Wright S. Communicating the diagnosis of motor neurone disease. Palliat Med. 1996;10:23–34
  46. Neudert C, Oliver D, Wasner M, Borasio GD. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001;248:612–616
  47. WHOQOL: Measuring quality of life. Geneva: World Health Organization. 1997. www.who.int/mental_health/media/68.pdf.
  48. Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S. Quality of life in ALS depends on factors other than strength and physical function. Neurology. 2000;55:388–392
  49. Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of life in ALS is maintained as physical function declines. Neurology. 2001;56:442–444
  50. Murphy PL, Albert SM, Weber C, Del Bene ML, Rowland LP. Impact of spirituality and religiousness on outcomes in patients with ALS. Neurology. 2000;55:1581–1584
  51. Goldstein LH, Atkins L, Leigh PN. Correlates of quality of life in people with motor neuron disease (MND). Amyotroph Lateral Scler Other Motor Neuron Disord. 2002;3:123–129
  52. Krivickas LS, Shockley L, Mitsumoto H. Home care of patients with amyotrophic lateral sclerosis (ALS). J Neurol Sci. 1997;152(Suppl 1):S82–89
  53. Mitsumoto H. Caregiver assessment: summary. Amyotroph Lateral Scler Other Motor Neuron Disord. 2002;3(Suppl 1):S31–34
  54. Traynor BJ, Alexander M, Corr B, Frost E, Hardiman O. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996–2000. J Neurol Neurosurg Psychiatry. 2003;74:1258–1261
  55. Chio A, Bottacchi E, Buffa C, Mutani R, Mora G, PARALS . Positive effects of tertiary centres for amyotrophic lateral sclerosis on outcome and use of hospital facilities. J Neurol Neurosurg Psychiatry. 2006;77:948–950
  56. Van den Berg JP, Kalmijn S, Lindeman E, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology. 2005;65:1264–1267

PII: S0953-6205(08)00261-6

doi: 10.1016/j.ejim.2008.09.002

European Journal of Internal Medicine
Volume 20, Issue 4 , Pages 355-358 , July 2009

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