Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease

Cochrane Database of Systematic Reviews

Volumn , Issue 4, 2009, Pages

  Ng, Louisa ^a   Khan, Fary ^b   Mathers, Susan ^c  

^a ROYAL MELBOURNE HOSPITAL   (Australia)

^b UNIVERSITY OF MELBOURNE   (Australia)

^c Calvary Health Care Bethlem Limited   (Australia)

Author keywords

Adult; Amyotrophic lateral sclerosis *rehabilitation ; Cross sectional studies; Humans; Prospective studies

Indexed keywords

ADULT DISEASE; AMYOTROPHIC LATERAL SCLEROSIS; CAREGIVER; CLINICAL TRIAL; COST EFFECTIVENESS ANALYSIS; DIET THERAPY; DIETETICS; DISABILITY; HOSPITALIZATION; HUMAN; LENGTH OF STAY; MOTOR NEURON DISEASE; OCCUPATIONAL THERAPY; ORTHOTICS; PALLIATIVE THERAPY; PATIENT CARE; PATIENT COUNSELING; PHYSIOTHERAPY; QUALITY OF LIFE; RELIGION; REVIEW; SHORT FORM 36; SOCIAL WORK; SPEECH THERAPY; SURVIVAL; SYSTEMATIC REVIEW; TREATMENT INDICATION; TREATMENT OUTCOME;

EID: 77950175096     PISSN: 1469493X     EISSN: None     Source Type: Journal    
DOI: 10.1002/14651858.CD007425.pub2     Document Type: Review

References (58)

1. Calzada-Sierra 2001 {published data only} Calzada-Sierra DJ, Gómez Fernandez L. The importance of multifactorial rehabilitation treatment in amyotrophic lateral sclerosis. Revista de Neurologia 2001;32(5):423-6.
2. Chio 2006 {published data only} 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. Journal of Neurology, Neurosurgery & Psychiatry 2006;77(8): 948-50.
3. Dal Bello-Haas 2007 {published data only} Dal Bello-Haas VP, Florence JM, Kloos AD, Scheirbecker J, Lopate G, Hayes SM, et al.A randomized controlled trial of resistance exercise in individuals with ALS. Neurology 2007;68(23):2003-7.
4. Drory 2001 {published data only} Drory VE, Goltsman E, Reznik JG, Mosek A, Korczyn AD. The value of muscle exercise in patients with amyotrophic lateral sclerosis. Journal of the Neurological Sciences 2001;191(1-2):133-7.
5. Traynor 2003 {published data only} 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. Journal of Neurology, Neurosurgery and Psychiatry 2003;74:1258-61.
6. van den Berg 2005 {published data only} Van den Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, Van der Graaff MM, et al.Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 2005;65(8):1264-7.
7. van der Steen 2009 {published data only} Van der Steen I, Van den Berg JP, Buskens E, Lindeman E, Van den Berg LH. The costs of amyotrophic lateral sclerosis, according to type of care. Amyotrophic Lateral Sclerosis 2009;10(1):27-34.
8. Zoccolella 2007 {published data only} Zoccolella S, Beghi E, Palagano G, Fraddosio A, Guerra V, Lepore V, et al.ALS multidisciplinary clinic and survival: results from a population-based study in Southern Italy. Journal of Neurology 2007;254(8):1107-12.
9. AMNDR 2005 AMNDR Steering Committee. Australian Motor Neurone Disease Registry. World Federation of Neurology Meeting. 2005.
10. Anderson 2005 Andersen PM, Borasio GD, Dengler R, Hardiman O, Kollewe K, Leigh PN, et al.EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis. EFNS task force on management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives. European Journal of Neurology 2005;12(12):921-38.
11. Bromberg 2008 Bromberg MB. Quality of life in amyotrophic lateral sclerosis. Physical Medicine and Rehabilitation Clinics of North America 2008;19(3):591-605, x-xi.
12. Brooks 1994 Brooks BR. El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. Subcommittee on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Escorial 'Clinical limits of amyotrophic lateral sclerosis' workshop contributors. Journal of the Neurological Sciences 1994;124(Suppl):S96-107.
13. Brooks 2000 Brooks BR, Miller RG, Swash M, Munsat TL, World Federation of Neurology, Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and other motor neuron disorders 2000;1(5):293-9.
14. Brown 1995 Brown RH. Amyotrophic lateral sclerosis: recent insights from genetics and transgenic mice. Cell 1995;80(5):687- 92.
15. Brown 2004 Brown M, Gordon WA. Empowerment in measurement: 'muscle', 'voice' and subjective quality of life as a gold standard. Archives of Physical Medicine and Rehabilitation 2004;85(4 suppl 2):S13-20.
16. Cicerone 2005 Cicerone KD. Evidence based practice and limits of rational rehabilitation. Archives of Physical Medicine and Rehabilitation 2005;86:1073-4.
17. Cookson 1999 Cookson MR, Shaw PJ. Oxidative stress and motor neuron disease. Brain Pathology 1999;9(1):165-86.
18. Dal Bello-Haas 2008 Dal Bello-Haas V, Florence JM, Krivikas LS. Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database of Systematic Reviews 2008, Issue 2. Art.No.:CD005229. DOI:10.1002/14651858. CD005229. pub2.[Art. No.: CD005229. DOI: 10.1002/14651858.CD005229.pub2]
19. DeJong 2005 DeJong G, Horn SD, Conroy B, Nichols D, Healton EB. Opening the black box of post-stroke rehabilitation: stroke rehabilitation patients, processes, and outcomes. Archives of Physical Medicine and Rehabilitation 2005;86(12 Suppl 2):S1-7.
20. Egger 1998 Egger M, Smith GD. Bias in location and selection of studies. BMJ 1998;316(7124):61-6.
21. Elstein 2002 Elstein AS, Schwarz A. Clinical problem solving and diagnostic decision making: selective review of the cognitive literature. BMJ 2002;324:729-32.
22. Forsgren 1983 Forsgren L, Almay BG, Holmgren G, Wall S. Epidemiology of motor neuron disease in northern Sweden. Acta Neurologica Scandinavica 1983;68(1):20-9.
23. Francis 1999 Francis K, Bach JR, DeLisa JA. Evaluation and rehabilitation of patients with adult motor neuron disease. Archives of Physical Medicine & Rehabilitation 1999;80(8):951-63.
24. Gassaway 2005 Gassaway J, Horn SD, DeJong G, Randall J, Smout MS. Applying the clinical practice improvement approach to stroke rehabilitation: methods used and baseline results. Archives of Physical Medicine and Rehabilitation 2005;86(12 Suppl 2):S16-33.
25. Greener 2002 Greener J, Langhorne P. Systematic reviews in rehab for stroke: issues and approaches to addressing them. Clinical Rehabilitation 2002;16(1):69-74.
26. Handbook 2008 Higgins JPT, Green S (editors). Cochrane Handbook for Systematic Reviews of Interventions. Version 5.0.0 [updated February 2008]. The Cochrane Collaboration, 2008. Available from www.cochrane-handbook.org.
27. Hardiman 2007 Hardiman O. Multidisciplinary care in motor neurone disease. In: Kiernan M editor(s). The Motor Neurone Disease Handbook. Prymont: Australasian Medical Publishing Company Limited, 2007.
28. Hickey 1996 Hickey AM, Bury G, O'Boyle CA, Bradley F, O'Kelly FD, Shannon W. A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. BMJ (Clinical Research edition) 1996;313(7048):29-33.
29. Horn 2005 Horn SD, DeJong G, Ryser DK, Veasie PJ, Teraoka J. Another look at observational studies in rehabilitation research: going beyond the holy grail of the randomized controlled trial. Archives of Physical Medicine and Rehabilitation 2005;86(12 Suppl 2):S8-15.
30. ICF 2001 International classification of functioning, disability and health (ICF). World Health Organization (WHO) 2001.
31. Jenkinson 1999 Jenkinson C, Fitzpatrick R, Brennan C, Bromberg M, Swash M. Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neuron disease: the ALSAQ-40. Journal of Neurology 1999;246(suppl 3):III/16-21.
32. Khan 2007 Khan F, Turner-Stokes L, Ng L, Kilpatrick T. Multidisciplinary rehabilitation for adults with multiple sclerosis. Cochrane Database of Systematic Reviews 2007, Issue 2. [DOI: 10.1002/14651858. CD0006036.pub2]
33. Klein 1996 Klein LM, Forshew DA. The economic impact of ALS. Neurology 1996;47(4 suppl 2):S126-9.
34. Langhorne 2002 Langhorne P, Pollock A, in conjunction with the Stroke Unit Trialists Collaboration. What are the components of stroke unit care?. Age and Ageing 2002;31:365-71.
35. Langmore 2006 Langmore SE, Kasarskis EJ, Manca ML, Olney RK. Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database of Systematic Reviews 2006, Issue 4. Art. No.: CD004030. DOI:10.1002/1461858. CD004030. pub2.[Art. No.: CD004030. DOI: 10.1002/14651858.CD004030.pub2]
36. Lee 1995 Lee JR, Annegers FJ, Appel SH. Prognosis of amyotrophic lateral sclerosis and the effects of referral selection. Journal of Neurological Sciences 1995;132(2):207-15.
37. Logroscino 2008 Logroscino G, Traynor BJ, Hardiman O, Chio A, Couratier P, Mitchell JD, et al.Descriptive epidemiology of amyotrophic lateral sclerosis: new evidence and unsolved issues. Journal of Neurology, Neurosurgery and Psychiatry 2008;79(1):6-11.
38. McGuire 1996 McGuire D, Garrison L, Armon C, Barohn R, Bryan W, Miller RG, et al.Relationship of the Tufts Quantitative Neuromuscular Exam (TQNE) and the Sickness Impact Profile (SIP) in measuring progression of ALS. Neurology 1996;46(5):1442-4.
39. Miller 2007 Miller RG, Mitchell JD, Lyon M, Moore DH. Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database of Systematic Reviews 2007, Issue 1. [DOI: 10.1002/14651858. CD0001447.pub2]
40. MNDA 2007 Research Strategy 2006-2012. Motor Neurone Disease Association, Northampton, UK 2007.
41. Mountain 2004 Mountain LA, Campbell SE, Seymour DG, Primrose WR, Whyte MI. Assessment of individual quality of life using the SEIQoL-DW in older medical patients. QJM: monthly journal of the Association of Physicians 2004;97:519-24.
42. NSF 2005 DH Long-term Conditions NSF Team. The national service framework for long-term conditions. Department of Health. London: DH, 2005.
43. RCP 2008 Royal College of Physicians, National Council for Palliative Care, British Society of Rehabilitation Medicine. Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care. Concise guidance to good practice series. Vol. 10, London: RCP, 2008.
44. RevMan 2008 The Nordic Cochrane Centre. The Cochrane Collaboration. Review Manager. 5.0. Copenhagen: The Nordic Cochrane Centre. The Cochrane Collaboration, 2008.
45. Rocha 2005 Rocha JA, Reis C, Simoes F, Fonseca J, Mendes Ribeiro J. Diagnostic investigation and multidisciplinary management in motor neuron disease. Journal of Neurology 2005;252(12):1435-47.
46. Shaw 1997 Shaw PJ, Ince PG. Glutamate, excitotoxicity and amyotrophic lateral sclerosis. Journal of Neurology 1997;244(Suppl 2):3S-14.
47. Shefner 2008 Shefner JM. Designing clinical trials in amyotrophic lateral sclerosis. Physical Medicine and Rehabilitation Clinics of North America 2008;19(3):495-508.
48. Simmons 2005 Simmons Z. Management strategies for patients with amyotrophic lateral sclerosis from diagnosis through death. Neurologist 2005;11(5):257-70.
49. Simmons 2006 Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg M, et al.The ALSSQOL: balancing physical and nonphysical factors in assessing quality of life in ALS. Neurology 2006;67(9):1659-64.
50. Steultjens 2004 Steultjens EMJ, Dekker J, Bouter LM, van Schaardenburg D, van Kuyk MAH, van den Ende CHM. Occupational therapy for rheumatoid arthritis. Cochrane Database of Systematic Reviews 2004, Issue 1. Art.No.:CD0031114. DOI:10.1002/14651858.CD003114. pub 2. [DOI: 1002/14651858.CD003114.pub2]
51. Talman 2009 Talman P, Forbes A, Mathers S. Clinical phenotypes and natural progression for motor neuron disease: analysis from an Australian database. Amyotrophic Lateral Sclerosis 2009;10(2):79-84.
52. Tate 2006 Tate DG. The state of rehabilitation research: art or science?. Archives of Physical Medicine and Rehabilitation 2006;87:160-6.
53. Traue 2005 Traue DC, Ross JR. Palliative care in non malignant diseases. Journal of the Royal Society of Medicine 2005;98:503-6.
54. Turner 2007 Turner MR, Al-Chalabi A. Clinical phenotypes. In: Kiernan M editor(s). The Motor Neurone Disease Handbook. Prymont: Australasian Medical Publishing Company Limited, 2007:55-73.
55. Turner-Stokes 2005 Turner-Stokes L, Disler P, Nair A, Wade DT. Multidisciplinary rehabilitation for acquired brain injury in adults of working age. Cochrane Database of Systematic Reviews 2005, Issue 3. [DOI: Art No.:CD004170. DOI:10.1002/14651858]
56. Turner-Stokes 2007 Turner-Stokes L, Sykes N, Silbert E, Khatri A, Sutton L, Young E. From diagnosis to death: exploring the interface between neurology, rehabilitation and palliative care in the management of people with long term neurological conditions. Clinical Medicine 2007;7(2): 129-36.
57. Wade 1992 Wade DT. Measurement in neurological rehabilitation. Oxford: Oxford University Press, 1992.
58. Worms 2001 Worms PM. The epidemiology of motor neuron diseases: a review of recent studies. Journal of the Neurological Sciences 2001;191(1-2):3-9.