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

Quality Standards Subcommittee of the American Academy of Neurology Practice advisory on the treatment of amyotrophic lateral sclerosis with riluzole Neurology 1997, 49 657-659. (Class I)

Subcommittee on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Esconal "Clinical Limits of Amyotrophic Lateral Sclerosis" Workshop Contributors El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis J Neurol Sci 1994; 124(Suppl):96-107 (Class III)

Lind SE , Good MD , Seidel S. , Csordas T. , Good BJ Telling the diagnosis in cancer J Clin Oncol 1989, 7:583-589 (Class III)

Damian D. , Tattersall Mhn. Letters to patients. Improving communication in cancer care Lancet 1991, 338:923-925. (Class I)

Tattersall Mhn , Butow PN , Griffin A. , Dunn SM The take-home message: Patients prefer consultation audiotapes to summary letters J Clin Oncol 1994, 12.1305-1311. (Class I)

Doyle D. Breaking bad news J Royal Soc Med 1996, 89:590-591 (Class III)

Okamura H. , Uchitomi Y. , Sasako M. , Eguchi K. , Kakizoe T. Guidelines for telling the truth to cancer patients J Clin Oncol 1998; 2:1-4, (Class III)

Post SG , Whitehouse PJ Fairhill guidelines on the ethics of the care of people with Alzheimer's disease A clinical summary. Center for Biomedical Ethics, Case Western Reserve University and the Alzheimer's Association J Am Genatr Soc 1995; 43:1423-1429. (Class III)

Davies E. , Hopkins A. Good practice in the management of adults with malignant cerebral glioma. Clinical guidelines. Working Group Br J Neurosurg 1997; 11.318-330 (Class III)

Girgis A. , Sanson-Fisher RW Breaking bad news: Consensus guidelines for medical practitioners J Clin Oncol 1995, 13:2449-2456. (Class III)

Charchaflie RJ , Fernandez LB , Perec CJ , Gonzalez E. , Marzi A. Functional studies of the parotid and pancreas glands in amyotrophic lateral sclerosis J Neurol Neurosurg Psychiatry 1974; 37:863-867 (Class III)

Goode RL , Smith RA The surgical management of sialorrhea Laryngoscope 1970; 80.1078-1089. (Class III)

Blasco PA , Stansbury Jck Glycopyrrolate treatment of chronic drooling Arch Pediatr Adolesc . Med 1996, 150:932-935 (Class III)

Stern LM Preliminary study of glycopyrrolate in the management of drooling J Paediatr Child. Health 1997, 33:52-54. (Class IIIa)

Camp-Bruno JA , Winsberg BG , Green-Parsons AR , Abrams JP Efficacy of benztropine therapy for drooling Dev Med Child Neurol 1989; 31.309-319. (Class I)

Reddihough D. , Johnson H. , Staples M. , Hudson I. , Exarchos H. Use of trihexyphenidyl hydrocholride to control drooling of children with cerebral palsy Dev Med Child Neurol 1990; 32:985-989 (Class III)

Brodtkorb E. , Wyzocka-Bakowska MM , Lillevold PE, et al. Transdermal scopolamine in drooling J Mental Deficiency Res 1988; 32:233-237 (Class I)

Lewis DW , Fontana C. , Mehallick LK , Everett Y. Transdermal scopolamine for reductions in drooling in developmentally delayed children Dev Med Child Neurol 1994 ; 36 484-486. (Class I)

Talmi YP , Finkelstein Y. , Zohar Y. , Launan N. Reduction of salivary flow with scopoderm TTS Ann Otol Rhinol Laryngol 1988, 97:128-130. (Class III)

Dworkin JP , Nadal JC Nonsurgical treatment of drooling in a patient with closed head injury and severe dysarthria Dysphagia 1991; 6.40-49. (Class III)

Newell AR , Orser R. , Hunt M. The control of oral secretions in bulbar ALS/MND J Neurol Sci 1996, 139(Suppl):43-44. (Class III)

Bach JR Mechanical insufflation-exsufflation: Comparison of peak expiratory flows with manually assisted and unassisted coughing techniques Chest 1993(b); 104.1553-1562 (Class III)

Bach JR , Smith WH , Michaels J., et al. Airway secretion clearance by mechanical exsufflation for postpoliomyelitis ventilator assisted individuals Arch Phys Med Rehabil 1993; 74 170-77 (Class III)

Robinson Acr , Khoury GG , Robinson PM Role of irradiation in the suppression of parotid secretions J Laryngol Otol 1989, 103.594-595 (Class III)

Janzen VD , Rae R. , Hudson AJ Otolaryngologic manifestations of amyotrophic lateral sclerosis J Otolaryngl 1988, 17 41-42 (Class III)

Poeck K. Pathologisches lachen und weinen bei bulbrer myatrophischer lateralsklerose Deutsche Medizinische Wochenschrift 1996 ; 94:310-314. (Class III)

Schiffer RB , Cash J. , Hemon RM Treatment of emotional lability with low-dosage tricyclic antidepressants Psychosomatics 1983 , 24:1094-1096 (Class III)

Caroscio JT , Cohen JA , Gudesblatt M. Amitryptyline in amyotrophic lateral sclerosis N Engl J Med 1985; 313:1478. (Class III)

Gallagher JP Pathologic laughter and crying in ALS. A search for their origin Acta Neurol Scand 1989, 80.114-117 (Class III)

Schiffer RB , Herndon RM , Rudick RA Treatment of pathologic laughing and weeping with amitriptyline N Engl J Med 1985, 312:1480-1482 (Class I)

Iannaccone S. , Ferini-Strambi L. Pharmacologic treatment of emotional lability Clin Neuropharm 1996 , 19.532-535. (Class III)

Kasarskis EJ , Berryman S. , Vanderleest JG , Schneider AR , Mc-Clam CJ The nutritional status of patients with amyotrophic lateral sclerosis. Relation to the proximity of death Am J Clin Nutr 1996, 63:130-137. (Class III)

Slowie LA , Paige MS , Antel JP Nutritional considerations in the management of patients with amyotrophic lateral sclerosis (ALS J Am Diet Assoc 1983 ; 83:44-47. (Class III)

Martin BJ , Corlew MM , Wood H., et.al The association of swallowing dysfunction and aspiration pneumonia Dysphagia 1994; 9 1-6. (Class II)

Schmidt J. , Holas M. , Halvorson K. , Reding M. Videofluoroscopic evidence of aspiration predicts pneumonia and death but not dehydration following stroke Dysphagia 1994; 9:7-11 (Class III)

Wilcox F. , Liss JM , Siegel GM Interjudge agreement in videofluoroscopic studies of swallowing J Speech Hear Res 1996, 39:144-152 (Class III)

Mathus-Vliegen Lmh , Louwerse LS , Merkus MP , Tytgat Gns , Vianney de Jong JMP Percutaneous endoscopic gastrostomy in patients with amyotrophic lateral sclerosis and impaired pulmonary function Gastrointest Endosc 1994; 40:463-469. (Class II)

Mazzini L. , Corra T. , Zaccala M., et al. Percutaneous endoscopic gastrostomy and enteral nutrition in amyotrophic lateral sclerosis Neurology 1995, 242:695-698. (Class II)

Llaneza PP , Menendez AM , Roberts R. , Dunn GD Percutaneous endoscopic gastrostomy: Clinical experience and follow-up South Med J 1988, 81:321-324. (Class III)

Mighell AJ , Carton Atm , Boobis LH , Stassen Lfa Acceptance and perception of percutaneous endoscopic gastrostomy by patients with upper digestive tract cancer Br J Oral Maxillo Surg 1995; 33:19-22 (Class III)

Park RH , Allison MC , Lang J., et al Randomised comparison of percutaneous endoscopic gastrostomy and nasogastric tube feeding in patients with persisting neurological dysphagia Br. Med J 1992, 304:1406-1409. (Class I)

Akpunonu BE , Mutgi AB , Roberts C., et al Modified barium swallow does not affect how often PEGs are placed after stroke J Clin Gastroenterol 1997; 24:74-78. (Class III)

Leighton Sej , Burton MJ , Lund WS , Cochrane GM Swallowing in motor neuron disease J Royal Soc Med 1994 ; 87:801-805. (Class III)

The role of percutaneous endoscopic gastrostomy in enteral feeding. Guidelines for clinical application Gastrointest Endo 1988; 34(Suppl 3):35S-36S. (Class III)

Sherman MS , Paz HL Review of respiratory care of the patient with amyotrophic lateral sclerosis Respiration 1994; 61:61-67. (Class III)

Stambler N. , Charatan M. , Cedarbaum JM Prognostic indicators of survival in ALS ALS CNTF treatment study group Neurology 1998 ; 50:66-72. (Class I)

Nordt SP , Clark RF Midazolam: A review of therapeutic uses and toxicity J Emer Med 1997, 15.357-365 (Class III)

DiSario JA , Foutch PG , Sanowski RA Poor results with percutaneous endoscopic jejunostomy Gastrointest Endo 1990; 36:257-260 (Class III)

Hassett JM , Sunby C. , Flint LM No elimination of aspiration pneumonia in neurologically disabled patients with feeding gastrostomy Surg Gyn Obstet 1988 , 167.383-388. (Class II)

Jarnagin WR , Duh Q. , Mulvihill SJ, et al. The efficacy and limitations of percutaneous endoscopic gastrostomy Arch Surg 1992; 127:261-264. (Class III)

Kadakia SC , Sullivan HO , Starnes E. Percutaneous endoscopic gastrostomy or jejunostomy and the incidence of aspiration in 79 patients Am J Surg 1992 ; 164.114-118(Class III)

Patel PH , Thomas E. Risk factors for pneumonia after percutaneous endoscopic gastrostomy Clin Gastroenterol 1990, 12:389-392. (Class III)

Cogen R. , Weinryb J. Aspiration pneumonia in nursing home patients fed via gastrostomy tubes Am J Gastroenterol 1989; 84:1509-1512. (Class III)

Light VL , Slezak FA , Porter JA , Gerson LW , McCord G. Predictive factors for early mortality after percutaneous endoscopic gastrostomy Gastrointest Endo 1995; 42:330-335. (Class III)

Sarton S. , Trevisani L. , Tassinari D. , Nielsen I. , Gilli G. , Donati D. et al. Prevention of aspiration pneumonia during long-term feeding by percutaneous endoscopic gastrostomy: Might cisapride play any role? An open pilot study Support Care Cancer 1994 2:188-190. (Class III)

Carter GT , Johnson ER , Bonekat HW , Lieberman JS Laryngeal diversion in the treatment of intractable aspiration in motor neuron disease Arch Phys Med Rehabil 1992; 73:680-682. (Class III)

Hawthorne M. , Gray R. , Cottam C. Conservative laryngectomy (An effective treatment for severe aspiration in motor neuron disease J Laryngol Otol 1987; 101:283-285. (Class III)

MacDougall G. , Wilson JA , Pryde A. , Grant R. Analysis of the pharyngoesophageal pressure profile in amyotrophic lateral sclerosis Otolaryngol Head Neck Surg 1995, 112:258-261 (Class II)

Aboussouan LS , Khan SU , Meeker DP , Stelmach K. , Mitsumoto H. Effect of noninvasive positive-pressure ventilation on survival in amyotrophic lateral sclerosis Ann Intern Med 1997, 127 450-453 (Class II)

Barbè F. , Quera-Salva MA , de Lattre J. , Gajoddos P. , AgustiÌ Agn Long-term effects of nasal intermittent positive-pressure ventilation on pulmonary function and sleep architecture in patients with neuromuscular diseases Chest 1996, 110 1179-1183. (Class II)

Schlamp V. , Karg O. , Abel A. , Schlotter B. , Wasner M. , Borasio GD Nicht-invasive intermittierende Selbstbeatmung (ISB) als Palliativmaßnahme bei amyotropher Lateralsklerose [Non-invasive intermittent home mechanical ventilation as a palliative treatment in amyotrophic lateral sclerosis] Nervenarzt 1998; 69 1074-1082 (Class III)

Poponick JM , Jacobs I. , Supiski G. , DiMarco AF Effect of upper respiratory tract infection in patients with neuromuscular disease Am J Respir Cnt Care Med 1997; 156 659-664 (Class III)

Fallat RJ , Jewitt B. , Bass M. , Kamm B. , Norris FH, Jr Spirometry in amyotrophic lateral sclerosis Arch Neurol 1979, 36.74-80 (Class III)

Rochester DF , Esau SA Assessment of ventilatory function in patients with neuromuscular disease Clin Chest Med 1994,14.751-763. (Class III)

Vitacca M. , Clini E. , Facchetti D. , Pagani M. , Poloni M. , Porta R. et al Breathing pattern and respiratory mechanics in patients with amyotrophic lateral sclerosis Eur Respir J 1997; 10 1614-1621 (Class III)

Schiffman PL , Belsh JM Pulmonary function at diagnosis of amyotrophic lateral sclerosis. Rate of deterioration Chest 1993, 103:508-513. (Class III)

Gnggs RC , Donohoe KM , Utell MJ , Goldblatt D. , Moxley RT Evaluation of pulmonary function in neuromuscular disease Arch Neurol 1981; 38:9-12. (Class III)

Kaplan LM , Hollander D. Respiratory dysfunction in amyotrophic lateral sclerosis Clin Chest Med 1994; 15:675-681 (Class III)

Cazzolli PA , Oppenheimer EA Home mechanical ventilation for amyotrophic lateral sclerosis. Nasal compared to tracheostomyintermittent positive pressure ventilation J Neurol Sci 1996; 139(Suppl):123-128. (Class III)

Bach JR Amyotrophic lateral sclerosis: Predictors for prolongation of life by noninvasive respiratory aids Arch Phys Med Rehabil 1995 ; 76:828-832 (Class III)

Howard RS , Wiles CM , Loh L. Respiratory complications and their management in motor neuron disease Brain 1989, 112 1155-1170. (Class III)

Piper AJ , Sullivan CE Effects of long-term nocturnal nasal ventilation on spontaneous breathing during sleep in neuromuscular and chest wall disorders Eur Respir J 1996, 9 1515-1522 (Class II)

Pinto AC , Evangelista T. , Carvalho M. , Alves MA , Sales Luis ML Respiratory assistance with a non-invasive ventilator (Bipap) in MND/ALS patients Survival rates in controlled trials J Neurol Sci 1995, 129(Suppl).19-26. (Class II)

Goldblatt D. , Greenlaw J. Starting and stopping the ventilator for patients with amyotrophic lateral sclerosis Neurol Clin 1989, 7:789-806. (Class III)

Oppenheimer EA Decision-making in the respiratory care of amyotrophic lateral sclerosis: Should home mechanical ventilation be used? Palliat Med 1993; 5(Suppl 2).49-64. (Class III)

Bach JR Amyotrophic lateral sclerosis. Communication status and survival with ventilatory support Am J Phys Med Rehabil 1993(a); 72:343-349. (Class III)

McDonald ER , Hillel A. , Wiedenfeld SA Evaluation of the psychological status of ventilatory-supported patients with ALS/MND Palliat Med 1996; 10 35-41 (Class II)

Moss AH , Oppenheimer EA , Casey P. , Cazzolli PA , Roos RP , Stocking CB et al Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation Advance care planning and outcomes Chest 1996, 110:249-255 (Class III)

Moss AH , Casey P. , Stocking CB , Roos RP , Brooks BR , Siegler M. Home ventilation for amyotrophic lateral sclerosis patients Outcomes, costs, and patient, family and physician attitudes Neurology 1993, 43 438-443 (Class III)

Bach JR , Campagnolo DI , Hoeman S. Life satisfaction of individuals with Duchenne muscular dystrophy using long-term mechanical ventilatory support Am J Phys Med Rehabil 1991, 70.129-135 (Class II)

American Academy of Neurology Ethics and Humanities Subcommittee Position statement: Certain aspects of the care and management of profoundly and irreversibly paralyzed patients with retained consciousness and cognition Neurology 1993; 43.222-223. (Class III)

Bernat JL , Cranford RE , Kittredge FI, Jr , Rosenberg RN Competent patients with advanced states of permanent paralysis have the right to forgo life-sustaining therapy Neurology 1993, 43:224-225 (Class III)

Gilligan T. , Raffin TA Withdrawing life support: Extubation and prolonged terminal weans are inappropriate Crit Care Med 1996, 24:352-353 (Class III)

The American Academy of Neurology Ethics and Humanities Subcommittee. Palliative Care in Neurology Neurology 1996, 46:870-872 (Class III)

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McIver B. , Walsh D. , Nelson K. The use of chlorpromazine for symptom control in dying cancer patients J Pain Symptom Manage 1994; 9:341-345 (Class III)

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Teno JM , Lynn J. , Connors AF, Jr , Wenger N. , Phillips RS , Alzola C. et al The illusion of end-of-life resource savings with advance directives SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment J Am Genatr Soc 1997 ; 45:513-518. (Class I)

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SUPPORT principal investigators. A controlled trial to improve care for seriously ill hospitalized patients—The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT JAMA 1995; 274:1591-1598. (Class I, II)

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Mower WR , Baraff LJ Advance directives—Effect of type of directive on physicians' therapeutic decisions Arch Intern Med 1993 ; 153:375-381. (Class III)

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