Information for health and community care professionals

Ashworth and others 2012 Treatment for spasticity in amyotrophic lateral sclerosis/motor neuron disease

Ashworth, N. L.; Satkunam, L. E. & Deforge, D. (2012), 'Treatment for spasticity in amyotrophic lateral sclerosis/motor neuron disease.', Cochrane Database Syst Rev(2), CD004156

Andersen and others 2007 Good practice in the management of amyotrophic lateral sclerosis: clinical guidelines. An evidence-based review with good practice points. EALSC Working Group

Andersen, P. M.; Borasio, G. D.; Dengler, R.; Hardiman, O.; Kollewe, K.; Leigh, P. N.; Pradat, P.-F.; Silani, V.; Tomik, B. & Group, E. A. L. S. C. W. (2007), 'Good practice in the management of amyotrophic lateral sclerosis: clinical guidelines. An evidence-based review with good practice points. EALSC Working Group.', Amyotroph Lateral Scler 8(4), 195--213.

Averill and others 2007 Psychological health in patients with amyotrophic lateral sclerosis

Averill, A. J.; Kasarskis, E. J. & Segerstrom, S. C. (2007), 'Psychological health in patients with amyotrophic lateral sclerosis.', Amyotroph Lateral Scler 8(4), 243--254

Benatar and others 2009 Treatment for familial amyotrophic lateral sclerosis/motor neuron disease

Benatar, M.; Kurent, J. & Moore, D. H. (2009), 'Treatment for familial amyotrophic lateral sclerosis/motor neuron disease.', Cochrane Database Syst Rev(1), CD006153.

Bongioanni and others 2004 (updated 2009) Neurotrophic factor (CNTF) for amyotrophic lateral sclerosis/motor neuron disease

Bongioanni, P.; Reali, C. & Sogos, V. (2004 updated 2009), 'Ciliary neurotrophic factor (CNTF) for amyotrophic lateral sclerosis/motor neuron disease.', Cochrane Database Syst Rev(3), CD004302.

Borasio and Voltz 2006

Borasi, G.D and Voltz, R. (2006) 'Advance directives' in Palliative Care in Amyotrophic Lateral Sclerosis from Diagnosis to Bereavement, D Oliver, G D Borasio, D Walsh (eds), 2nd ed, Oxford University Press, New York.

Carers Australia 2010 Supporting family carers

Carers Australia (2010) 'Supporting family carers', About Carers, Carers Australia, accessed 6 June 2010.

Chio and others 2009 Prognostic factors in ALS: A critical review

Chio, A.; Logroscino, G.; Hardiman, O.; Swingler, R.; Mitchell, D.; Beghi, E.; Traynor, B. G. & of the Eurals Consortium, O. B. (2009), 'Prognostic factors in ALS: A critical review', Amyotrophic Lateral Sclerosis 10(5-6), 310--323.

Clayton and others 2007 Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers

Clayton JM, Hancock KM, Butow PN, Tattersall MH, Currow DC; Australian and new Zealand Expert Advisory Group, Adler J, Aranda S, Auret K, Boyle F, Britton A, Chye R, Clark K, Davidson P, Davis JM, Girgis A, Graham S, Hardy J, Introna K, Kearsley J, Kerridge I, Kristjanson L, Martin P, McBride A, Meller A, Mitchell G, Moore A, Noble B, Olver I, Parker S, Peters M, Saul P, Stewart C, Swinburne L, Tobin B, Tuckwell K, Yates P; Australasian Society of HIV Medicine; Australian and New Zealand Society of Palliative Medicine; Australasian Chapter of Palliative Medicine; Royal Australasian College of Physicians; Australian College of Rural and Remote Medicine; Australian General Practice Network; Australian Society of Geriatric Medicine; Cancer Voices Australia; Cardiac Society of Australia and New Zealand; Clinical Oncological Soceity of Australia; Motor Neurone Disease Association of Australia; Palliative Care Australia; Palliative Care Nurses Australia; Royal Australian College of General Practitioners; Royal College of Nursing, Australia; Thoracic Society of Australia and New Zealand.(2007), 'Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.', Med J Aust 186(12 Suppl), S77, S79, S83--S77, S79, 108.

Cox and others 2007 Pathogenesis of motor neurone disease

Cox, L.E; Kirby, J.; Shaw, P., (2007) 'Pathogenesis of motor neurone disease', The Motor Neurone Disease Handbook, (M Kiernan, Ed), Australasian Medical Publishing Company Limited, Sydney.

Dalbello-Haas and others 2008 Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease

Dalbello-Haas, V.; Florence, J. M. & Krivickas, L. S. (2008), 'Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease.', Cochrane Database Syst Rev(2), CD005229.

http://dx.doi.org/10.1002/14651858.CD005229.pub2

Gallagher and Monroe 2006 Psychosocial care

Gallagher, D. and Monroe, B. (2006), 'Psychosocial care' in Palliative Care in Amyotrophic Lateral Sclerosis from Diagnosis to Bereavement, D Oliver, G D Borasio, D Walsh (eds), 2nd ed, Oxford University Press, New York.

Hardiman 2007 Multidisciplinary care in motor neurone disease

Hardiman, O. (2007), 'Multidisciplinary care in motor neurone disease', The Motor Neurone Disease Handbook, (M Kiernan, Ed), Australasian Medical Publishing Company Limited, Sydney.

Heffernan and others 2006 Management of respiration in MND/ALS patients: an evidence based review

Heffernan, C.; Jenkinson, C.; Holmes, T.; Macleod, H.; Kinnear, W.; Oliver, D.; Leigh, N. & Ampong, M.-A. (2006), 'Management of respiration in MND/ALS patients: an evidence based review.', Amyotroph Lateral Scler 7(1), 5--15.

Kinnersley and others 2007

Kinnersley, P.; Edwards, A.; Hood, K.; Cadbury, N.; Ryan, R.; Prout, H.; Owen, D.; Macbeth, F.; Butow, P. & Butler, C. (2007), 'Interventions before consultations for helping patients address their information needs.', Cochrane Database Syst Rev(3), CD004565.

Lambert 2006 Spiritual care

Lambert, R. (2006) 'Spiritual care' in Palliative Care in Amyotrophic Lateral Sclerosis from Diagnosis to Bereavement, D Oliver, G D Borasio, D Walsh (eds), 2nd ed, Oxford University Press, New York.

Lillo and Hodges 2009 Frontotemporal dementia and motor neurone disease: overlapping clinic-pathological disorders

Lillo, P. & Hodges, J. R. (2009), 'Frontotemporal dementia and motor neurone disease: overlapping clinic-pathological disorders.', J Clin Neurosci 16(9), 1131--1135

Katzberg and others 2011 Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease

Katzberg, H. D. and Benatar, M. 2011, 'Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease.', Cochrane Database Syst Rev 1, CD004030.

 

 

McCabe and O'Connor 2010 Economic impact of neurological illness on well-being

McCabe. M., O'Connor, E., (2010) 'The Economic Impact of Progressive Neurological Illness on Quality of Life in Australia', J Fam Econ Iss, 31:82–89.

McLeod and Clarke 2007 A review of psychosocial aspects of motor neurone disease

McLeod, J. E. & Clarke, D. M. (2007), 'A review of psychosocial aspects of motor neurone disease.', J Neurol Sci 258(1-2), 4--10

McMurray and Harris 2006 Bereavement

McMurray, A. and Harris, A. (2006) 'Bereavement' in Palliative Care in Amyotrophic Lateral Sclerosis from Diagnosis to Bereavement, D Oliver, G D Borasio, D Walsh (eds), 2nd ed, Oxford University Press, New York.

Miller and others 2007 Riluzole for amyotrophic lateral sclerosis ALS/motor neuron disease MND

Miller, R. G.; Mitchell, J. D.; Lyon, M. & Moore, D. H. (2007), 'Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND).', Cochrane Database Syst Rev(1), CD001447.

Miller and others 2009a Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies

Miller, R. G.; Jackson, C. E.; Kasarskis, E. J.; England, J. D.; Forshew, D.; Johnston, W.; Kalra, S.; Katz, J. S.; Mitsumoto, H.; Rosenfeld, J.; Shoesmith, C.; Strong, M. J.; Woolley, S. C. and Quality Standards Subcommittee of the American Academy of Neurology (2009a), 'Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology.', Neurology 73(15), 1218--1226.

Miller and others 2009b Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, cognitive/behavioral impairment

Miller, R. G.; Jackson, C. E.; Kasarskis, E. J.; England, J. D.; Forshew, D.; Johnston, W.; Kalra, S.; Katz, J. S.; Mitsumoto, H.; Rosenfeld, J.; Shoesmith, C.; Strong, M. J.; Woolley, S. C. and Quality Standards Subcommittee of the American Academy of Neurology (2009b), Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology.', Neurology 73(15), 1218--1226.

Mitchell and others 2007 Recombinant human insulin-like growth factor I (rhIGF-I) for amyotrophic lateral sclerosis/motor neuron disease

Mitchell, J. D.; Wokke, J. H. J. & Borasio, G. D. (2007), 'Recombinant human insulin-like growth factor I (rhIGF-I) for amyotrophic lateral sclerosis/motor neuron disease.', Cochrane Database Syst Rev(4), CD002064.

Mitchell and others 2008 Multidisciplinary care planning and teamwork in primary care

Mitchell, G. K.; Tieman, J. J. & Shelby-James, T. M. (2008), 'Multidisciplinary care planning and teamwork in primary care.', Med J Aust 188(8 Suppl), S61--S64.

Mitsumoto and others 2005 Promoting excellence in end-of-life care in ALS

Mitsumoto, H.; Bromberg, M.; Johnston, W.; Tandan, R.; Byock, I.; Lyon, M.; Miller, R. G.; Appel, S. H.; Benditt, J.; Bernat, J. L.; Borasio, G. D.; Carver, A. C.; Clawson, L.; Bene, M. L. D.; Kasarskis, E. J.; LeGrand, S. B.; Mandler, R.; McCarthy, J.; Munsat, T.; Newman, D.; Sufit, R. L. & Versenyi, A. (2005), 'Promoting excellence in end-of-life care in ALS.', Amyotroph Lateral Scler Other Motor Neuron Disord 6(3), 145--154

Brennan, F. 2010. 'A palliative approach to MND'

Brennan, F. 2010. ‘A palliative approach to MND’, paper presented at the MND NSW Special Interest Group Workshop, Sydney, 28 October

CareSearch

CareSearch palliative care knowledge network is an online resource consolidating evidence-based and quality information for various groups within the palliative care community. The website has been funded by the Australian Government as part of the National Palliative Care Program.

MND Australia 2011 Motor neurone disease aspects of care: for the primary health care team

MND Australia (2011) Motor neurone disease aspects of care: for the primary health care team has replaced the MND Australia (2008), Motor neurone disease: A problem solving approach - A guide for general practitioners.

MND Australia 2010 Motor neurone disease aspects of care: for staff of residential care facilities

MND Australia (2010). Motor neurone disease aspects of care: for staff of residential care facilities, MND Australia, Sydney.

Mockford and others 2006 A review: carers, MND and service provision

Mockford, C.; Jenkinson, C. & Fitzpatrick, R. (2006), 'A Review: carers, MND and service provision.', Amyotroph Lateral Scler 7(3), 132--141.

Murphy 2004 Communication strategies of people with ALS and their partners

Murphy, J. (2004), 'Communication strategies of people with ALS and their partners.', Amyotroph Lateral Scler Other Motor Neuron Disord 5(2), 121--126.

Murray and McKenzie 2007 Respiratory function in motor neurone disease

Murray, N and McKenzie, D. (2007), 'Respiratory function in motor neurone disease', The Motor Neurone Disease Handbook, (M Kiernan, Ed), Australasian Medical Publishing Company Limited, Sydney.

National Institute for Health and Clinical Excellence 2001 NICE: Guidance on the use of riluzole (Rilutek) for the treatment of motor neurone disease

National Institute for Health and Clinical Excellence, (2001). NICE: Guidance on the use of riluzole (Rilutek) for the treatment of motor neurone disease.

National Institute for Health and Clinical Excellence 2010 NICE: The use of non-invasive ventilation in the management of motor neurone disease

National Institute for Health and Clinical Excellence, (2010). NICE: The use of non-invasive ventilation in the management of motor neurone disease.

Ng and others 2009 Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease

Ng, L.; Khan, F. & Mathers, S. (2009), 'Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease.', Cochrane Database Syst Rev(4), CD007425.

Oliver, D. 2010 'Patients with Cognitive Change - the challenge for families and professionals'

paper presented at the Allied Professionals Forum (APF), Orlando, Florida 10 December 2010. The APF is held on the day preceding the International ALS/MND Symposium each year.

Oliver, D. 2010 'Withdrawal of non-invasive ventilation - how can we help all involved?'

paper presented at the Allied Professionals Forum (APF), Orlando, Florida 10 December 2010. The APF is held on the day preceding the International ALS/MND Symposium each year.

Orrell 2010 Motor neuron disease: systematic reviews of treatment for ALS and SMA

Orrell, R. W. (2010), 'Motor neuron disease: systematic reviews of treatment for ALS and SMA.', Br Med Bull 93, 145--159.

Orrell and others 2007 Antioxidant treatment for amyotrophic lateral sclerosis/motor neuron disease

Orrell, R. W.; Lane, R. J. M. & Ross, M. (2007), 'Antioxidant treatment for amyotrophic lateral sclerosis / motor neuron disease.', Cochrane Database Syst Rev(1), CD002829.

OT Australia 2010

OT Australia (2010) accessed online 6 June 2010.

Palliative Care Australia 2008 Carers and end of life: position statement

Palliative Care Australia (2008) Carers and end of life: position statement, accessed online 15 June 2010.

Ramirez and others 2008 Fatigue in amyotrophic lateral sclerosis: frequency and associated factors

Ramirez, C.; Piemonte, M. E. P.; Callegaro, D. & Silva, H. C. A. D. (2008), 'Fatigue in amyotrophic lateral sclerosis: frequency and associated factors.', Amyotroph Lateral Scler 9(2), 75--80

Stone and O'Leary 2009 Systematic review of the effectiveness of botulinum toxin or radiotherapy for sialorrhea in patients with amyotrophic lateral sclerosis

Stone, C. A. and O'Leary, N. (2009), 'Systematic review of the effectiveness of botulinum toxin or radiotherapy for sialorrhea in patients with amyotrophic lateral sclerosis.', J Pain Symptom Manage 37(2), 246--258.

Strong and others 2009 Consensus criteria for the diagnosis of frontotemporal cognitive and behavioural syndromes in amyotrophic lateral sclerosis

Strong, M. J.; Grace, G. M.; Freedman, M.; Lomen-Hoerth, C.; Woolley, S.; Goldstein, L. H.; Murphy, J.; Shoesmith, C.; Rosenfeld, J.; Leigh, P. N.; Bruijn, L.; Ince, P. & Figlewicz, D. (2009), 'Consensus criteria for the diagnosis of frontotemporal cognitive and behavioural syndromes in amyotrophic lateral sclerosis.', Amyotroph Lateral Scler 10(3), 131--146

Tai and others 2008 A review of emerging access technologies for individuals with severe motor impairments

Tai, K.; Blain, S. & Chau, T. (2008), 'A review of emerging access technologies for individuals with severe motor impairments.', Assist Technol 20(4), 204--19.

Talman and others 2009 Clinical phenotypes and natural progression for motor neuron disease: analysis from an Australian database

Talman, P.; Forbes, A. & Mathers, S. (2009), 'Clinical phenotypes and natural progression for motor neuron disease: analysis from an Australian database.', Amyotroph Lateral Scler 10(2), 79--84.

Tomik and Guiloff 2010 Dysarthria in amyotrophic lateral sclerosis: a review

Tomik, B. & Guiloff, R. J. (2010), 'Dysarthria in amyotrophic lateral sclerosis: A review.', Amyotroph Lateral Scler 11(1-2), 4--15

Turner and Al-Chalabi 2007 Clinical phenotypes

Turner, M.R. and Al-Chalabi, A. (2007), 'Clinical phenotypes', The Motor Neurone Disease Handbook, (M Kiernan, Ed), Australasian Medical Publishing Company Limited, Sydney.

Vucic and others 2007 Diagnosis of motor neurone disease

Vucic, S.; Burke, D.; Kiernan, M. (2007), 'Diagnosis of motor neurone disease', The Motor Neurone Disease Handbook, (M Kiernan, Ed), Australasian Medical Publishing Company Limited, Sydney.

Erjavic, S. 2010. ‘An Overview of MND’

Erjavic, S. 2010. ‘An Overview of MND’, paper presented at the MND NSW Special Interest Group Workshop, Sydney, 28 October

Wolfe, L. 2010. 'Respiratory update in ALS'

Wolfe, L. 2010. 'Respiratory update in ALS' presentation at the 6th Annual ALS/MND Nursing Mini-Symposium, a satallite meeting of the 2010 International ALS/MND Symposium, Orlando, Fl, USA

Young and others 2011 Treatment for Sialorrhea (excessive saliva) in people with motor neuron disease/amyotrophic lateral sclerosis (review)

Young CA, Ellis C, Johnson J, Sathasivam S, Pih N 2011. 'Treatment for sialorrhea (excessive saliva) in people with motor neuron disease/amyotrophic lateral sclerosis', Cochrane Database Syst Rev 5, CD006981.

Hudson and others, Clinical Practice Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients

Hudson, P., Remedios, C., Zordan, R., Thomas, K., Clifton, D., Crewdson, M., Hall, C., Trauer, T., Bolleter, A., and Clarke,D.

Clinical Practice Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients.

Centre for Palliative Care, St Vincent’s Hospital Melbourne: Melbourne, Australia 2010.

Kiernan and others 2011 Amyotrophic Lateral Sclerosis - Review Article

Matthew C Kiernan, Steve Vucic, Benjamin C Cheah, Martin R Turner, Andrew Eisen, Orla Hardiman, James R Burrell, Margaret C Zoing, Amyotrophic lateral sclerosis  Review Article, The Lancet, Volume 377, Issue 9769, 12 March 2011-18 March 2011, Pages 942-955 reproduced with permssion from Elsevier

Zoing 2007 Motor neurone disease: a nurse's perspective

Zoing, M. (2007), 'Motor neurone disease: a nurse's perspective', The Motor Neurone Disease Handbook, (M Kiernan, Ed), Australasian Medical Publishing Company Limited, Sydney.

National End of Life Care Programme, 2010, Improving end of life care in neurological disease a framework for implementation

National End of Life Care Programme, 2010, Improving end of life care in neurological disease a framework for implementation

National End of Life Care Programme / National Council for Palliative Care / the neurological alliance, UK 

Sackett B and Sakel M, 2011, Motor Neurone Disease - A Patient's Journey

Brian Sackett and Mohammed Sakel, 2011, Practice, Motor Neurone Disease - A Patient's Journey, British Medical Journal, 342, d 1661

Caring Safely at Home

The Australian Government Department of Health and Ageing (DoHA) provided funding for the Caring Safely at Home (CSAH) project. The aim of this project was to enhance the ability of lay caregivers to manage subcutaneous medications thereby assisting palliative patients access to timely symptom management in the home.