Motor neurone disease: Disability profile and service needs in an Australian cohort

International Journal of Rehabilitation Research

Volumn 34, Issue 2, 2011, Pages 151-159

  Ng, Louisa ^a   Talman, Paul ^b   Khan, Fary ^c  

^a ROYAL MELBOURNE HOSPITAL   (Australia)

^b Barwon Health ^*  (Australia)

^c UNIVERSITY OF MELBOURNE   (Australia)

Author keywords

Caregivers; disability; health service utilization; motor neurone disease; rehabilitation; symptoms

Indexed keywords

CAREGIVERS; DISABILITY; HEALTH SERVICE UTILIZATION; MOTOR NEURONE DISEASE; REHABILITATION; SYMPTOMS;

HEALTH CARE;

HEALTH;

AGED; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; AUSTRALIA; CAREGIVER; CLASSIFICATION; COHORT ANALYSIS; COMORBIDITY; COST OF ILLNESS; CROSS-SECTIONAL STUDY; DAILY LIFE ACTIVITY; DISABILITY; FEMALE; HEALTH SERVICE; HUMAN; MALE; MIDDLE AGED; PALLIATIVE THERAPY; PROSPECTIVE STUDY; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; SELF CARE; SOCIAL SUPPORT;

ACTIVITIES OF DAILY LIVING; AGED; AGED, 80 AND OVER; AMYOTROPHIC LATERAL SCLEROSIS; CAREGIVERS; COHORT STUDIES; COMORBIDITY; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; DISABILITY EVALUATION; FEMALE; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MALE; MIDDLE AGED; PALLIATIVE CARE; PROSPECTIVE STUDIES; QUESTIONNAIRES; SELF CARE; SOCIAL SUPPORT; VICTORIA;

EID: 79955862108     PISSN: 03425282     EISSN: None     Source Type: Journal    
DOI: 10.1097/MRR.0b013e328344ae1f     Document Type: Article

References (44)

1. Adelman EE, Albert SM, Rabkin JG, Del Bene ML, Tider T, O'Sullivan I (2004). Disparities in perceptions of distress and burden in ALS patients and family caregivers. Neurology 62:1766-1770. (Pubitemid 38661732)
2. AMNDR Steering Committee (2005). Australian Motor Neurone Disease Registry (poster), World Federation of Neurology Meeting.
3. Andersen PM, Borasio GD, Dengler R, Hardiman O, Kollewe K, Leigh PN, et al. (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 Other Motor Neuron Disord 8:195-213. (Pubitemid 47190223)
4. Borasio GD, Shaw PJ, Hardiman O, Ludolph AC, Sales Luis ML, Silani V (2001). Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European survey. Amyotroph Lateral Scler Other Motor Neuron Disord 2:159-164. (Pubitemid 34013610)
5. Brooks BR, Miller RG, Swash M, Munsat TL (2000). El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 1:293-299.
6. Chio A, Silani V (2001). Amyotrophic lateral sclerosis care in Italy: a nationwide study in neurological centers. J Neurol Sci 191:145-150. (Pubitemid 33035908)
7. Chio A, Gauthier A, Vignola A, Calvo A, Ghiglione P, Cavallo E, et al. (2006). Caregiver time use in ALS. Neurology 67:902-904. (Pubitemid 44394217)
8. Cockerill R,Warren S (1990). Care for caregivers: the needs of family members of MS patients. J Rehabil 56:41-44.
9. Davis KL, Marin DB, Kane R, Patrick D, Peskind ER, Raskind MA, Puder KL (1997). The caregiver activity survey (CAS): development and validation of a new measure for caregivers of persons with Alzheimer's disease. Int J Geriatr Psychiatry 12:978-988. (Pubitemid 27480222)
10. Forsgren L, Almay BG, Holmgren G, Wall S (1983). Epidemiology of motor neuron disease in northern Sweden. Acta Neurol Scand 68:20-29. (Pubitemid 13029062)
11. Forshew DA, Bromberg MB (2003). A survey of clinicians' practice in the symptomatic treatment of ALS. Amyotroph Lateral Scler Other Motor Neuron Disord 4:258-263. (Pubitemid 37428481)
12. Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. (2007). A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology 68:923-926. (Pubitemid 46568504)
13. Geyh S, Cieza A, Schouten J, Dickson H, Frommelt P, Omar Z, et al. (2004). ICF core sets for stroke. J Rehabil Med 44:135-141. (Pubitemid 39307123)
14. Goldstein LH, Atkins L, Landau S, Brown R, Leigh PN (2006). Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study. Psychol Med 36:865-875. (Pubitemid 43744780)
15. Hardiman O (2007). Multidisciplinary care in motor neurone disease. In: Kiernan M, editor. The motor neurone disease handbook. Prymont: Australasian Medical Publishing Company Limited. pp. 164.
16. Hardiman O, Corr B, Frost E, Gibbons P, Mahon L, Traynor BJ (2003). Access to health services in Ireland for people with multiple sclerosis and motor neurone disease. Ir Med J 96:200-203.
17. Haverkamp LJ, Appel V, Appel SH (1995). Natural history of amyotrophic lateral sclerosis in a database population: validation of a scoring system and a model for survival prediction. Brain 118:707-719.
18. Hickenbottom SL, Fendrick AM, Kutcher JS, Kabeto MU, Katz SJ, Langa KM (2002). A national study of the quantity and cost of informal care giving for the elderly with stroke. Neurology 58:1754-1759. (Pubitemid 34663573)
19. Kaufmann P, Levy G, Montes J, Buchsbaum R, Barsdorf AI, Battista V, et al. (2007). Excellent inter-rater, intra-rater, and telephone-administered reliability of the ALSFRS-R in a multicenter clinical trial. Amyotroph Lateral Scler Other Motor Neuron Disord 8:42-46. (Pubitemid 46322939)
20. Kesselring J, Beer S (2005). Symptomatic therapy and neurorehabilitation in multiple sclerosis. Lancet Neurol 4:643-652. (Pubitemid 41317299)
21. Khan F, Pallant J (2007a). Chronic pain in multiple sclerosis: prevalence, characteristics, and impact on quality of life in an Australian community cohort. J Pain 8:614-623. (Pubitemid 47198553)
22. Khan F, Pallant JF (2007c). Use of the International Classification of Functioning, Disability and Health (ICF) to identify preliminary comprehensive and brief core sets for multiple sclerosis. Disabil Rehabil 29:205-213. (Pubitemid 47179932)
23. Khan F, Pallant JF (2010a). Use of the International Classification of Functioning, Disability and Health (ICF) to identify preliminary comprehensive and brief core sets for Guillain-Barre syndrome. Disabil Rehabil Oct 29. [Epub ahead of print].
24. Khan F, McPhail T, Brand C, Turner-Stokes L, Kilpatrick T (2006). Multiple sclerosis: disability profile and quality of life in an Australian community cohort. Int J Rehabil Res 29:87-96. (Pubitemid 44309727)
25. Khan F, Pallant J, Brand C (2007b). Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis. Disabil Rehabil 29:1241-1250. (Pubitemid 47189917)
26. Khan F, Pallant JF, Ng L, Bhasker A (2010b). Factors associated with long-term functional outcomes and psychological sequelae in Guillain-Barre syndrome. J Neurol 257:2024.
27. Klein LM, Forshew DA (1996). The economic impact of ALS. Neurology 47:S126-S129. (Pubitemid 26362013)
28. Lomen-Hoerth C, Murphy J, Langmore S, Kramer JH, Olney RK, Miller B (2003). Are amyotrophic lateral sclerosis patients cognitively normal? Neurology 60:1094-1097. (Pubitemid 36418766)
29. 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.
30. Ray RA, Street AF (2006). Caregiver bodywork: family members' experiences of caring for a person with motor neurone disease. J Adv Nurs 56:35-43. (Pubitemid 44395176)
31. Rhodes P, Shaw S (1999). Informal care and terminal illness. Health Soc Care Community 7:39-50.
32. Rothwell PM, McDowell Z, Wong CK, Dorman PJ (1997). Doctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis. BMJ 314:1580-1583. (Pubitemid 27229105)
33. Royal college of Physicians; National Council for palliative Care; BSoRM (2008). Long-term neurological conditions: management at the interface between neurology, rehabilitation and palliative care. London: RCP.
34. Swash M (2000). Clinical features and diagnosis of amyotrophic lateral sclerosis. In: Brown HR, Meininger V, Swash M, editors. Amyotrophic lateral sclerosis. London: Martin Dunitz Ltd.
35. Traynor BJ, Alexander M, Corr B, Frost E, Hardiman O (2003). Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996-2000. J Neurol Neurosurg Psychiatry 74:1258-1261.
36. Turner MR, Al-Chalabi A (2007). Clinical phenotypes. In: Kiernan M, editor. The motor neurone disease handbook. Prymont: Australasian Medical Publishing Company Limited. pp. 56-73.
37. Turner MR, Bakker M, Sham P, Shaw CE, Leigh PN, Al-Chalabi A (2002). Prognostic modelling of therapeutic interventions in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 3:15-21. (Pubitemid 34705122)
38. Turner-Stokes L (2008). The Needs and Provision Complexity Scale (NPCS) for LTNC,
39. Van den Berg JP, Kalmijn S, Lindeman E, Wokke JH, Van den Berg LH (2003). Rehabilitation care for patients with ALS in the Netherlands. Amyotroph Lateral Scler Other Motor Neuron Disord 4:186-190. (Pubitemid 37184889)
40. Van Teijlingen ER, Friend E, Kamal AD (2001). Service use and needs of people with motor neurone disease and their carers in Scotland. Health Soc Care Community 9:397-403. (Pubitemid 33696685)
41. Wellings DJ, Unsworth J (1997). Fortnightly review. Environmental control systems for people with a disability: an update. BMJ 315:409-412. (Pubitemid 27346044)
42. Wicks P, Abrahams S, Masi D, Hejda-Forde S, Leigh PN, Goldstein LH (2007). Prevalence of depression in a 12-month consecutive sample of patients with ALS. Eur J Neurol 14:993-1001. (Pubitemid 47300772)
43. World Health Organization (2001). International Classification of Functioning, Disability, and Health (ICF). Geneva: World Health Organization.
44. Zoccolella S, Beghi E, Palagano G, Fraddosio A, Guerra V, Lepore V, et al. (2007). ALS multidisciplinary clinic and survival: results from a populationbased study in Southern Italy. J Neurol 254:1107-1112. (Pubitemid 47353403)