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Neurological

NOTE: Some listings include a link to a related Promoting Excellence demonstration project.

Also see:
* Lifting the Veil of Huntington's Disease: Huntington's Disease Workgroup Recommendations to the Field. (Please note: Appendix Bibliographies and Resources)
* Completing the Continuum of ALS Care: A Consensus Document


Articles

Adelman EE, Albert SM, Rabkin JG et al. “Disparities in perceptions of distress and burden in ALS patients and family caregivers.” Neuroolgy, 62: 1766-1770, 2004.

Albert SM, Murphy PL, Del Bene et al. “Incidence and predictors of PEG placement in ALS/MND.” Journal of Neurological Science, 191: 115-119, 2001.

Albert SM, Murphy PL, Del Bene ML and Rowland LP. “Prospective study of palliative care in ALS: Choice, timing, outcomes.” Journal of Neurological Science, 169: 108-113, 1999.

Albert SM, Murphy PL, Del Bene ML and Rowland LP. “A prospective study of preferences and actual treatment choices in ALS.” Neurology, 53: 278-283, 1999.

Borasio GD, Gelinas DF and Yanagisawa N. “Mechanical ventilation in ALS: A cross-cultural perspective.” Journal of Neurology, 245: S7-S12, 1998.

Borasio GD, Shaw PJ, Hardiman O, et al, for the European ALS Study Group. “Standards of palliative care for patients with amyotrophic lateral sclerosis: Results of a European survey.” ALS & Other Motor Neuron Disorders, 2: 159-164, 2001.

Bradley WG, Anderson F, Bromberg et al and the ALS CARE Study Group. “Current management of ALS: Comparison of the ALS CARE Database and the AAN Practice Parameter.” Neurology, 57: 500-504, 2001.

Carter GT, et al. “Expanding the role of hospice care in amyotropic lateral sclerosis.” American Journal of Hospice & Palliative Care, 16(6): 707-710, 1999.

Carver AC, Vickrey BG, Bernat JL et al. “A survey of US neurologists’ attitudes, behavior and knowledge.” Neurology, 53: 284-293, 1999.

Forshew DA and Bromberg MB. “A clinicians’ survey of symptomatic treatment in ALS.” ALS & Other Motor Neuron Disorders, 4: 258-263, 2003.

Ganzini L, Johnston WS and Hoffman WF. “Correlates of suffering in amyotrophic lateral sclerosis.” Neurology, 52: 1434-1440, 1999.

Ganzini L, Johnston WS, McFarland BH, Tolle SW and Lee MA. “Attitudes of patients with amyotrophic lateral sclerosis and their caregivers toward assisted suicide.” New England Journal of Medicine, 339: 967-973, 1998.

Ganzini L, Johnston WS and Silveira MJ. “The final month of life in patients with ALS.” Neurology, 59: 428-431, 2002.

Ganzini L, Silveira MJ, Johnston WS. “Predictors and correlates of interest in assisted suicide in the final month of life among ALS patients in Oregon and Washington.” Journal of Pain and Symptom Management, 24: 312-317, 2002.

Lechtzin N, Wiener C, Clawson L ,et al, and the ALS CARE Study Group. “Use of non-
invasive ventilation in patients with amyotrophic lateral sclerosis.” ALS & Other Motor Neuron Disorders, 5: 9-15, 2004.

Lechtzin N, Wiener C, Clawson L, Chaudhry V and Diette GB. “Hospitalization in amyotrophic lateral sclerosis: Causes, costs, and outcomes.” Neurology, 56: 753-757, 2001.

Mandler RN, Anderson FA, Miller RG, Clawson L, Cudkowicz M, and the ALS CARE Study Group. “The ALS patient CARE Database: Insights into end-of-life care.” ALS & Other Motor Neuron Disorders, 2: 203-208, 2001.

McCluskey L and Houseman G. “Medicare hospice referral criteria for patients with amyotrophic lateral sclerosis: A need for improvement.” Journal of Palliative Medicine 7(1): 47-53, 2004.

McDonald ER, Hillel A, Wiedenfeld SA . “Evaluation of the psychological status of ventilatory-supported patients with ALS/MND.” Palliative Medicine, 10: 35-41, 1996.

McDonald ER, Wiedenfeld SA, Hillel A, Carpenter CL, Walter RA. “Survival in amyotrophic lateral sclerosis: The role of psychological factors.” Archive of Neurology, 51: 17-23, 1994.

Melo J, Homma A, Iturriaga E et al. “Pulmonary evaluation and prevalence of non-invasive ventilation in patients with amyotrophic lateral sclerosis: A multi-centre survey and proposal of a pulmonary protocol.” Journal of Neurological Science, 169: 114-117, 1999.

Mitsumoto H, Davidson M, Moore DH, et al. “Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction.” ALS & Other Motor Neuron Disorders, 4: 177-185, 2003.

Murphy PL, Albert SM, Weber CM et al. “Impact of spirituality and religiousness on outcomes in patients with amyotrophic lateral sclerosis.” Neurology, 55: 1581-1584, 2000.

Rabkin JG, Wagner GJ and Del Bene M. “Resilience and distress among amyotrophic lateral sclerosis patients and caregivers.” Psychosomatic Medicine, 62: 271-279, 2000.

Simmons Z, Bremer BA, Robbins RA et al. “Quality of life in ALS depends on factors other than strength and physical function.” Neurology, 55: 388-392, 2000.

Trail M, Nelson ND, Van JN et al. “Major stressors facing patients with amyotrophic lateral sclerosis (ALS): A survey to identify their concerns and to compare with those of their caregivers.” ALS & Other Motor Neuron Disorders, 45: 40-45, 2003.

Veldink JH, Wokke JHJ and Van der Wal G, et al. “Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands.” New England Journal of Medicine, 346: 1638-1644, 2002.

 

Books
Gettig, B. and Finney, T. Tube Feeding: Making the Decision: Frequently asked Questions.
www.kumc.edu/hospital/huntingtons/tube.html

 

Chapters
Brooks BR, Lewis D, Rawling J et al. “The natural history of amyotrophic lateral sclerosis.” In Motor Neuron Disease, Williams AC (ed.). London: Chapman & Hall, 1994.

 

Websites

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families.