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Sclerosi laterale amiotrofica come modello di gestione interdisciplinare
Titolo Rivista: SALUTE E SOCIETÀ 
Autori/Curatori: Andrea Calvo, Adriano Chiò 
Anno di pubblicazione:  2015 Fascicolo: Lingua: Italiano 
Numero pagine:  12 P. 173-184 Dimensione file:  81 KB
DOI:  10.3280/SES2015-003014
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Amyotrophic lateral sclerosis (ALS) is a paradigm of clinical care for its characteristics of progression, reduced life expectancy, loss of autonomy, lack of effective etiological therapies. The interdisciplinary approach proposed for some time in the management of patients with ALS provides an effective model of care, useful also for other pathological conditions. It is focused on the patient and his family, around which revolve all the professionalism, with the same role and importance. In the evolution of these models, research improvements, in particular genetic and neuropsychological discoveries become crucial: therefore the approach to the patient has become increasingly complex. In this work the main areas of interdisciplinary intervention will be considered, reporting different experiences, in particular of the Torino Expert Regional Center for ALS.


Keywords: Sclerosi laterale amiotrofica, team interdisciplinare

  1. Borasio G.D., Sloan R., Pongratz D.E. (1998). Breaking the news in amyotrophic lateral sclerosis. Journal of Neurological Science, 160 Suppl 1:S127-133
  2. Phukan J., Elamin M., Bede P., Jordan N., Gallagher L., Byrne S., Lynch C., Pender
  3. Billings P.R. (2005). Genetic nondiscrimination. Nature Genetics, 37:559-560., 10.1038/ng0605-55DOI: 10.1038/ng0605-55
  4. Byrne S., Elamin M., Bede P., Hardiman O. (2012). Absence of consensus in diagnostic criteria for familial neurodegenerative diseases. Journal of Neurology Neurosurgery Psychiatry, 83(4): 365-367., 10.1136/jnnp-2011-30153DOI: 10.1136/jnnp-2011-30153
  5. Cattaneo E. (2014). “Sul caso Stamina l’informazione-spettacolo è stata irresponsabile”, articolo de La Stampa, 19 gennaio
  6. Charcot J.M. (1874). Lecons sur le maladies du systeme nerveux. Paris: Par Bourneville Chiò A., Borasio G.D. (2004). Breaking the news in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorder. 5(4):195-201., 10.1080/1466082031001732DOI: 10.1080/1466082031001732
  7. Chiò A., Bottacchi E., Buffa C., Mutani R., Mora G. and the PARALS (including Calvo A) (2006). Positive effects of ALS tertiary centers on outcome and use of hospital facilities. Journal of Neurology Neurosurgery Psychiatry. 77(8): 948-950., 10.1136/jnnp.2005.08340DOI: 10.1136/jnnp.2005.08340
  8. Chiò A., Mora G., Calvo A., Mazzini L., Bottacchi E., Mutani R., PARALS (2009). Epidemiology of ALS in Italy: a 10-year prospective population-based study. Neurology. 72: 725-731., 10.1212/01.wnl.0000343008.26874.dDOI: 10.1212/01.wnl.0000343008.26874.d
  9. Chiò A., Canosa A., Gallo S., Cammarosano S., Moglia C., Fuda G., Calvo A., Gabriele M. (2011). For the PARALS group. ALS clinical trials: Do enrolled patients accurately represent the ALS population? Neurology. 11:77(15): 1432-1437., 10.1212/WNL.0b013e318232ab9DOI: 10.1212/WNL.0b013e318232ab9
  10. Chiò A., Ilardi A., Cammarosano S., Moglia C., Montuschi A., Calvo A. (2012). Neurobehavioral dysfunction in ALS has a negative effect on outcome and use of PEG and NIV. Neurology. 3;78(14): 1085-9., 10.1212/WNL.0b013e31824e8f5DOI: 10.1212/WNL.0b013e31824e8f5
  11. Chiò A., Logroscino G., Traynor B.J., Collins J., Simeone J.C., Goldstein L.A., White L.A. (2013) Global epidemiology of amyotrophic lateral sclerosis: a systematic review of the published literature. Neuroepidemiology., 41(2): 118-30., 10.1159/00035115DOI: 10.1159/00035115
  12. Chiò A., Battistini S., Calvo A., Caponnetto C., Conforti F.L., Corbo M., Giannini F., Mandrioli J., Mora G., Sabatelli M., the ITALSGEN Consortium, Ajmone C., Mastro E., Pain D., Mandich P., Penco S., Restagno G., Zollino M., Surbone A.
  13. (2014). Genetic counselling in ALS: facts, uncertainties and clinical suggestions. Journal of Neurology Neurosurgery Psychiatry. 85(5): 478-485., 10.1136/jnnp-2013-30554DOI: 10.1136/jnnp-2013-30554
  14. Elamin M., Phukan J., Bede P., Jordan N., Byrne S., Pender N., Hardiman O. (2011). Executive dysfunction is a negative prognostic indicator in patients with ALS without dementia. Neurology. 5;76(14): 1263-1269., 10.1212/WNL.0b013e318214359fLomen-HoerthC.,AndersonT.,MillerB.(2002).Theoverlapofamyotrophiclateralsclerosisandfrontotemporaldementia.Neurology.8;59(7):1077-9.DOI:10.1212/WNL.59.7.107DOI: 10.1212/WNL.0b013e318214359fLomen-HoerthC.,AndersonT.,MillerB.(2002).Theoverlapofamyotrophiclateralsclerosisandfrontotemporaldementia.Neurology.8;59(7):1077-9.DOI:10.1212/WNL.59.7.107
  15. Montuschi A., Iazzolino B., Calvo A., Moglia C., Lopiano L., Restagno G., Brunetti M., Ossola I., Lo Presti A., Cammarosano S., Canosa A., Chiò A. (2015). Cognitive correlates in amyotrophic lateral sclerosis: a population-based study in Italy. Journal of Neurology Neurosurgery Psychiatry. 86(2): 168-173., 10.1136/jnnp-2013-30722DOI: 10.1136/jnnp-2013-30722
  16. Norris F.H., Holden D., Kandal K., Stanley E. (1987). Home nursing care by families for severely paralyzed ALS patients. Advance in Experimental Medicine and Biology. 209: 231-238. DOI 10.1007/978-1-4684-5302-7_35
  17. Lomen-Hoerth C., Anderson T., Miller B. (2002) The overlap of amyotrophic lateral sclerosis and frontotemporal dementia. Neurology. 8;59(7): 1077-9., 10.1212/WNL.59.7.107DOI: 10.1212/WNL.59.7.107
  18. Olney R.K., Murphy J., Forshew D., Garwood E., Miller B.L., Langmore S., Kohn
  19. M.A., Lomen-Hoerth C. (2005). The effects of executive and behavioral dysfunction on the course of ALS. Neurology. 13;65(11): 1774-7., 10.1212/01.wnl.0000188759.87240.8DOI: 10.1212/01.wnl.0000188759.87240.8
  20. N., Hardiman O. (2012) The syndrome of cognitive impairment in amyotrophic lateral sclerosis: a population-based study. Journal of Neurology Neurosurgery Psychiatry. 83(1): 102-8., 10.1136/jnnp-2011-30018DOI: 10.1136/jnnp-2011-30018
  21. Turner M.R., Hardiman O., Benatar M., Brooks B.R., Chio A., de Carvalho M., Ince P.G., Lin C., Miller R.G., Mitsumoto H., Nicholson G., Ravits J., Shaw P.J., Swash M., Talbot K., Traynor B.J., Van den Berg L.H., Veldink J.H., Vucic S., Kiernan M.C. (2013) Controversies and priorities in amyotrophic lateral sclerosis. Lancet Neurology. 12(3): 310-22., 10.1016/S1474-4422(13)70036-DOI: 10.1016/S1474-4422(13)70036-
  22. Veronese S., Valle A., Chiò A., Calvo A., Oliver D. (2014). The last months of life of people with amyotrophic lateral sclerosis in mechanical invasive ventilation: A qualitative study. Amyotrophic Lateral Sclerosis Frontotemporal Degener. 27: 1-6., 10.3109/21678421.2014.91363DOI: 10.3109/21678421.2014.91363
  23. Wertz D.C. (2002). Genetic discrimination-an overblown fear? Nature Review Genetics. 3(7):496., 10.1038/nrg85DOI: 10.1038/nrg85
  24. Zinman L., Cudkowicz M. (2011). Emerging targets and treatments in amyotrophic lateral sclerosis. Lancet Neurology. 10(5):481-90., 10.1016/S1474-4422(11)70024-DOI: 10.1016/S1474-4422(11)70024-

Andrea Calvo, Adriano Chiò, in "SALUTE E SOCIETÀ" 3/2015, pp. 173-184, DOI:10.3280/SES2015-003014

   

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