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Volumn 29, Issue 5, 2012, Pages 362-367

Experience of Services as a Key Outcome in Amyotrophic Lateral Sclerosis (ALS) Care: The Case for a Better Understanding of Patient Experiences

Author keywords

amyotrophic lateral sclerosis; motor neurone disease; multidisciplinary; outcomes; satisfaction; services

Indexed keywords

AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; HEALTH SERVICES RESEARCH; HUMAN; METHODOLOGY; ORGANIZATION AND MANAGEMENT; OUTCOME ASSESSMENT; PALLIATIVE THERAPY; PATIENT CARE; PATIENT SATISFACTION; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; TREATMENT OUTCOME;

EID: 84864231589     PISSN: 10499091     EISSN: None     Source Type: Journal    
DOI: 10.1177/1049909111423774     Document Type: Article
Times cited : (17)

References (78)
  • 1
    • 70450180994 scopus 로고    scopus 로고
    • Prognostic factors in ALS: a critical review
    • Chio A,Logroscino G,Hardiman O, et al.Prognostic factors in ALS: a critical review.Amyotroph Lateral Scler. 2009;10 (5-6): 310-323.
    • (2009) Amyotroph Lateral Scler , vol.10 , Issue.5-6 , pp. 310-323
    • Chio, A.1    Logroscino, G.2    Hardiman, O.3
  • 2
    • 84864247597 scopus 로고    scopus 로고
    • 2nd ed. Oxford: Oxford University Press; 2006, Oxford: Oxford University Press
    • Oliver D,Borasio GD,Walsh D2nd ed. Oxford: Oxford University Press; 2006.Oxford: Oxford University Press; 2006:.
    • (2006)
    • Oliver, D.1    Borasio, G.D.2    Walsh, D.3
  • 3
    • 34447281327 scopus 로고    scopus 로고
    • Palliative care for patients with amyotrophic lateral sclerosis. "Prepare for the worst and hope for the best
    • Mitsumoto H,Rabkin J.Palliative care for patients with amyotrophic lateral sclerosis. "Prepare for the worst and hope for the best".JAMA. 2007;298 (2): 207-216.
    • (2007) JAMA , vol.298 , Issue.2 , pp. 207-216
    • Mitsumoto, H.1    Rabkin, J.2
  • 4
    • 35448935317 scopus 로고    scopus 로고
    • 2nd ed. Sudbury, MA: Jones Bartlett; 2006., Sudbury, MA: Jones Bartlett
    • Kane RLUnderstanding Health Care Outcomes Research. 2nd ed. Sudbury, MA: Jones Bartlett; 2006.Sudbury, MA: Jones Bartlett; 2006:.
    • (2006) Understanding Health Care Outcomes Research
    • Kane, R.L.1
  • 5
    • 28444484671 scopus 로고    scopus 로고
    • Patients' and healthcare providers' understanding of life-sustaining treatment: are perceptions of goals shared or divergent?
    • Rodriguez KL,Young AJ.Patients' and healthcare providers' understanding of life-sustaining treatment: are perceptions of goals shared or divergent?.Soc Sci Med. 2006;62 (1): 125-133.
    • (2006) Soc Sci Med , vol.62 , Issue.1 , pp. 125-133
    • Rodriguez, K.L.1    Young, A.J.2
  • 6
    • 67650151567 scopus 로고    scopus 로고
    • Measuring outcomes in palliative care: limitations of QALYs and the road to PaIYs
    • Normand C.Measuring outcomes in palliative care: limitations of QALYs and the road to PaIYs.J Pain Symptom Manage. 2009;38 (1): 27-31.
    • (2009) J Pain Symptom Manage , vol.38 , Issue.1 , pp. 27-31
    • Normand, C.1
  • 7
    • 23944502332 scopus 로고    scopus 로고
    • Personal values and individual quality of life in palliative care patients
    • Fegg MJ,Wasner M,Neudert C,Borasio GD.Personal values and individual quality of life in palliative care patients.J Pain Symptom Manage. 2005;30 (2): 154-159.
    • (2005) J Pain Symptom Manage , vol.30 , Issue.2 , pp. 154-159
    • Fegg, M.J.1    Wasner, M.2    Neudert, C.3    Borasio, G.D.4
  • 8
    • 77951625026 scopus 로고    scopus 로고
    • Center to advance palliative care palliative care clinic clinical care and customer satisfaction metrics consensus recommendations
    • Weissman DE,Morrison RE,Meier DE.Center to advance palliative care palliative care clinic clinical care and customer satisfaction metrics consensus recommendations.J Palliat Med. 2010;13 (2): 179-184.
    • (2010) J Palliat Med , vol.13 , Issue.2 , pp. 179-184
    • Weissman, D.E.1    Morrison, R.E.2    Meier, D.E.3
  • 9
    • 0020930093 scopus 로고
    • Patient satisfaction in primary healthcare: a literature review and analysis
    • Pascoe GC.Patient satisfaction in primary healthcare: a literature review and analysis.Eval Program Plann. 1983;6 (3-4): 185-210.
    • (1983) Eval Program Plann , vol.6 , Issue.3-4 , pp. 185-210
    • Pascoe, G.C.1
  • 10
    • 0037783913 scopus 로고    scopus 로고
    • The association between satisfaction with services provided in primary care and outcomes in Type 2 diabetes mellitus
    • Alazri MH,Neal RD.The association between satisfaction with services provided in primary care and outcomes in Type 2 diabetes mellitus.Diabet Med. 2003;20 (6): 486-490.
    • (2003) Diabet Med , vol.20 , Issue.6 , pp. 486-490
    • Alazri, M.H.1    Neal, R.D.2
  • 11
    • 35148883314 scopus 로고    scopus 로고
    • Patient satisfaction with care for urgent health problems: a survey of family practice patients
    • Howard M,Goertzen J,Hutchison B,Kaczorowski J,Morris K.Patient satisfaction with care for urgent health problems: a survey of family practice patients.Ann Fam Med. 2007;5 (5): 419-424.
    • (2007) Ann Fam Med , vol.5 , Issue.5 , pp. 419-424
    • Howard, M.1    Goertzen, J.2    Hutchison, B.3    Kaczorowski, J.4    Morris, K.5
  • 12
    • 84872207815 scopus 로고    scopus 로고
    • Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis. A review
    • Foley G,Timonen V,Hardiman O.Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis. A review.Amyotroph Lateral Scler.
    • Amyotroph Lateral Scler
    • Foley, G.1    Timonen, V.2    Hardiman, O.3
  • 13
    • 79955862108 scopus 로고    scopus 로고
    • Motor neurone disease: disability profile and service needs in an Australian cohort
    • Ng L,Talman P,Khan F.Motor neurone disease: disability profile and service needs in an Australian cohort.Int J Rehabil Res. 2011;34 (2): 151-159.
    • (2011) Int J Rehabil Res , vol.34 , Issue.2 , pp. 151-159
    • Ng, L.1    Talman, P.2    Khan, F.3
  • 14
    • 0035522535 scopus 로고    scopus 로고
    • Service use and needs of people with motor neurone disease and their carers in Scotland
    • van Teijlingen ER,Friend E,Kamal AD.Service use and needs of people with motor neurone disease and their carers in Scotland.Health Soc Care Community. 2001;9 (6): 397-403.
    • (2001) Health Soc Care Community , vol.9 , Issue.6 , pp. 397-403
    • van Teijlingen, E.R.1    Friend, E.2    Kamal, A.D.3
  • 15
    • 33846871180 scopus 로고    scopus 로고
    • An investigation of patients' and providers' views of services for motor neurone disease
    • Brown JB,Lattimer V,Tudball T.An investigation of patients' and providers' views of services for motor neurone disease.B J Neuro Nurs. 2005;1 (5): 249-252.
    • (2005) B J Neuro Nurs , vol.1 , Issue.5 , pp. 249-252
    • Brown, J.B.1    Lattimer, V.2    Tudball, T.3
  • 16
    • 83655176899 scopus 로고    scopus 로고
    • Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: why are such services used or refused?
    • O'Brien MR,Whitehead B,Murphy PN,Mitchell JD,Jack BA.Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: why are such services used or refused?.Palliat Med. 2011;:.
    • (2011) Palliat Med
    • O'Brien, M.R.1    Whitehead, B.2    Murphy, P.N.3    Mitchell, J.D.4    Jack, B.A.5
  • 17
    • 12344250578 scopus 로고    scopus 로고
    • Living with motor neurone disease: lives, experiences of services and suggestions for change
    • Hughes RA,Sinha A,Higginson I,Down K,Leigh PN.Living with motor neurone disease: lives, experiences of services and suggestions for change.Health Soc Care Community. 2005;13 (1): 64-74.
    • (2005) Health Soc Care Community , vol.13 , Issue.1 , pp. 64-74
    • Hughes, R.A.1    Sinha, A.2    Higginson, I.3    Down, K.4    Leigh, P.N.5
  • 18
    • 33749506040 scopus 로고    scopus 로고
    • Are supportive services meeting the needs of Australians with neurodegenerative conditions and their families?
    • Kristjanson LJ,Aoun SM,Yates P.Are supportive services meeting the needs of Australians with neurodegenerative conditions and their families?.J Palliat Care. 2006;22 (3): 151-157.
    • (2006) J Palliat Care , vol.22 , Issue.3 , pp. 151-157
    • Kristjanson, L.J.1    Aoun, S.M.2    Yates, P.3
  • 19
    • 11344285691 scopus 로고    scopus 로고
    • I prefer contact this close": perceptions of AAC by people with motor neurone disease and their communication partners
    • Murphy J."I prefer contact this close": perceptions of AAC by people with motor neurone disease and their communication partners.ACC. 2004;20 (4): 259-271.
    • (2004) ACC , vol.20 , Issue.4 , pp. 259-271
    • Murphy, J.1
  • 20
    • 48849085468 scopus 로고    scopus 로고
    • Satisfaction with services among people with progressive neurological illnesses and their carers in Australia
    • McCabe MP,Roberts C,Firth L.Satisfaction with services among people with progressive neurological illnesses and their carers in Australia.Nurs Health Sci. 2008;10 (3): 209-215.
    • (2008) Nurs Health Sci , vol.10 , Issue.3 , pp. 209-215
    • McCabe, M.P.1    Roberts, C.2    Firth, L.3
  • 21
    • 0030710981 scopus 로고    scopus 로고
    • Home care of patients with amyotrophic lateral sclerosis
    • Krivickas LS,Shockley L,Mitsumoto H.Home care of patients with amyotrophic lateral sclerosis.J Neurol Sci. 1997;152 (suppl l): 82-89.
    • (1997) J Neurol Sci , vol.152 , Issue.SUPPL. l , pp. 82-89
    • Krivickas, L.S.1    Shockley, L.2    Mitsumoto, H.3
  • 22
    • 33750452320 scopus 로고    scopus 로고
    • How does current care practice influence the experience of a new diagnosis of motor neurone disease? A qualitative study of current guidelines-based practice
    • Hugel H,Grundy N,Rigby S,Young CA.How does current care practice influence the experience of a new diagnosis of motor neurone disease? A qualitative study of current guidelines-based practice.Amyotroph Lateral Scler. 2006;7 (3): 161-166.
    • (2006) Amyotroph Lateral Scler , vol.7 , Issue.3 , pp. 161-166
    • Hugel, H.1    Grundy, N.2    Rigby, S.3    Young, C.A.4
  • 23
    • 0029809010 scopus 로고    scopus 로고
    • The amyotrophic lateral sclerosis (ALS) patient perspective on misdiagnosis and its repercussions
    • Belsh JM,Schiffman PL.The amyotrophic lateral sclerosis (ALS) patient perspective on misdiagnosis and its repercussions.J Neurol Sci. 1996;139 (suppl 1): 110-116.
    • (1996) J Neurol Sci , vol.139 , Issue.SUPPL. 1 , pp. 110-116
    • Belsh, J.M.1    Schiffman, P.L.2
  • 25
    • 79951737325 scopus 로고    scopus 로고
    • From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neurone disease; experiences of people with ALS/MND and family caregivers: a qualitative study
    • O'Brien MR,Whitehead B,Jack BA,Mitchell JD.From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neurone disease; experiences of people with ALS/MND and family caregivers: a qualitative study.Amyotroph Lateral Scler. 2011;12 (2): 97-104.
    • (2011) Amyotroph Lateral Scler , vol.12 , Issue.2 , pp. 97-104
    • O'Brien, M.R.1    Whitehead, B.2    Jack, B.A.3    Mitchell, J.D.4
  • 26
    • 78649362069 scopus 로고    scopus 로고
    • Evaluating a fast-track service for diagnosing MND/ALS against traditional pathways
    • Callagher P,Mitchell D,Bennett W,Addison-Jones R.Evaluating a fast-track service for diagnosing MND/ALS against traditional pathways.B J Neuro Nurs. 2009;5 (7): 322-325.
    • (2009) B J Neuro Nurs , vol.5 , Issue.7 , pp. 322-325
    • Callagher, P.1    Mitchell, D.2    Bennett, W.3    Addison-Jones, R.4
  • 27
    • 37349011221 scopus 로고    scopus 로고
    • ALS patients and caregivers communication preferences and information seeking behaviour
    • Chio A,Montuschi A,Cammarosano S, et al.ALS patients and caregivers communication preferences and information seeking behaviour.Eur J Neurol. 2008;15 (1): 55-60.
    • (2008) Eur J Neurol , vol.15 , Issue.1 , pp. 55-60
    • Chio, A.1    Montuschi, A.2    Cammarosano, S.3
  • 28
    • 0023887506 scopus 로고
    • Patients' perspectives of the role of care providers in amyotrophic lateral sclerosis
    • Beisecker AE,Cobb AK,Ziegler DK.Patients' perspectives of the role of care providers in amyotrophic lateral sclerosis.Arch Neurol. 1988;45 (5): 553-556.
    • (1988) Arch Neurol , vol.45 , Issue.5 , pp. 553-556
    • Beisecker, A.E.1    Cobb, A.K.2    Ziegler, D.K.3
  • 29
    • 0035172501 scopus 로고    scopus 로고
    • Wheelchair use by patients with amyotrophic lateral sclerosis: a survey of user characteristics and selection preferences
    • Trail M,Nelson N,Van JN,Appel SH,Lai EC.Wheelchair use by patients with amyotrophic lateral sclerosis: a survey of user characteristics and selection preferences.Arch Phys Med Rehabil. 2001;82 (1): 98-102.
    • (2001) Arch Phys Med Rehabil , vol.82 , Issue.1 , pp. 98-102
    • Trail, M.1    Nelson, N.2    Van, J.N.3    Appel, S.H.4    Lai, E.C.5
  • 30
    • 76049101653 scopus 로고    scopus 로고
    • Powered wheelchair prescription, utilisation, satisfaction, and cost for patients with amyotrophic lateral sclerosis: preliminary data for evidence-based guidelines
    • Ward AL,Sanjak M,Duffy K, et al.Powered wheelchair prescription, utilisation, satisfaction, and cost for patients with amyotrophic lateral sclerosis: preliminary data for evidence-based guidelines.Arch Phys Med Rehabil. 2010;91 (2): 268-272.
    • (2010) Arch Phys Med Rehabil , vol.91 , Issue.2 , pp. 268-272
    • Ward, A.L.1    Sanjak, M.2    Duffy, K.3
  • 31
    • 77951850922 scopus 로고    scopus 로고
    • At home and on demand mechanical cough assistance program for patients with amyotrophic lateral sclerosis
    • Vitacca M,Paneroni M,Trainini D, et al.At home and on demand mechanical cough assistance program for patients with amyotrophic lateral sclerosis.Am J Phys Med Rehabil. 2010;89 (5): 401-406.
    • (2010) Am J Phys Med Rehabil , vol.89 , Issue.5 , pp. 401-406
    • Vitacca, M.1    Paneroni, M.2    Trainini, D.3
  • 32
    • 77958502293 scopus 로고    scopus 로고
    • Implementation of a wireless device for real-time telemedical assistance of home-ventilated amyotrophic lateral sclerosis patients: a feasibility study
    • Lopes de Almeida JP,Pinto AC,Pereira J,Pinto S,de Carvalho M.Implementation of a wireless device for real-time telemedical assistance of home-ventilated amyotrophic lateral sclerosis patients: a feasibility study.Telemed J E Health. 2010;16 (8): 883-888.
    • (2010) Telemed J E Health , vol.16 , Issue.8 , pp. 883-888
    • Lopes de Almeida, J.P.1    Pinto, A.C.2    Pereira, J.3    Pinto, S.4    de Carvalho, M.5
  • 34
    • 79955564398 scopus 로고    scopus 로고
    • Amyotrophic lateral sclerosis patients' self-reported satisfaction with assistive technology
    • Gruis KL,Wren PA,Huggins JE.Amyotrophic lateral sclerosis patients' self-reported satisfaction with assistive technology.Muscle Nerve 43. 2011; (5): 643-647.
    • (2011) Muscle Nerve 43 , Issue.5 , pp. 643-647
    • Gruis, K.L.1    Wren, P.A.2    Huggins, J.E.3
  • 35
    • 79955779329 scopus 로고    scopus 로고
    • Advance care planning for patients with ALS: feasibility of an interactive computer program
    • Hossler C,Levi BH,Simmons Z,Green MJ.Advance care planning for patients with ALS: feasibility of an interactive computer program.Amyotroph Lateral Scler. 2011;12 (3): 172-177.
    • (2011) Amyotroph Lateral Scler , vol.12 , Issue.3 , pp. 172-177
    • Hossler, C.1    Levi, B.H.2    Simmons, Z.3    Green, M.J.4
  • 36
    • 41849124879 scopus 로고    scopus 로고
    • ALS patients request more information about cognitive symptoms
    • Wicks P,Frost J.ALS patients request more information about cognitive symptoms.Eur J Neurol. 2008;15 (5): 497-500.
    • (2008) Eur J Neurol , vol.15 , Issue.5 , pp. 497-500
    • Wicks, P.1    Frost, J.2
  • 37
    • 77953856664 scopus 로고    scopus 로고
    • Sharing health data for better outcomes on PatientLikeMe
    • Wicks P,Massagli M,Frost J, et al.Sharing health data for better outcomes on PatientLikeMe.J Med Internet Res. 2010;12 (2): e19.
    • (2010) J Med Internet Res , vol.12 , Issue.2
    • Wicks, P.1    Massagli, M.2    Frost, J.3
  • 39
    • 0141628879 scopus 로고    scopus 로고
    • Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study
    • 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.J Neurol Neurosurg Psychiatry. 2003;74 (9): 1258-1261.
    • (2003) J Neurol Neurosurg Psychiatry , vol.74 , Issue.9 , pp. 1258-1261
    • Traynor, B.J.1    Alexander, M.2    Corr, B.3    Frost, E.4    Hardiman, O.5
  • 40
    • 0029160951 scopus 로고
    • Prognosis of amyotrophic lateral sclerosis and the effect of referral selection
    • Lee JRJ,Annegers JF,Appel SH.Prognosis of amyotrophic lateral sclerosis and the effect of referral selection.J Neurol Sci. 1995;132 (2): 207-215.
    • (1995) J Neurol Sci , vol.132 , Issue.2 , pp. 207-215
    • Lee, J.R.J.1    Annegers, J.F.2    Appel, S.H.3
  • 41
    • 33847187687 scopus 로고    scopus 로고
    • Effect of referral bias on assessing survival in ALS
    • Sorenson EJ,Mandrekar J,Crum B,Stevens JC.Effect of referral bias on assessing survival in ALS.Neurology. 2007;68 (8): 600-602.
    • (2007) Neurology , vol.68 , Issue.8 , pp. 600-602
    • Sorenson, E.J.1    Mandrekar, J.2    Crum, B.3    Stevens, J.C.4
  • 42
    • 80052944160 scopus 로고    scopus 로고
    • Outcomes of patients with amyotrophic lateral sclerosis attending a multidisciplinary care unit
    • Rodriguez de Rivera FJ,Oreja Guevara C,Sanz Gallego I, et al.Outcomes of patients with amyotrophic lateral sclerosis attending a multidisciplinary care unit.Neurologia. 2011;26 (8): 455-460.
    • (2011) Neurologia , vol.26 , Issue.8 , pp. 455-460
    • Rodriguez de Rivera, F.J.1    Oreja Guevara, C.2    Sanz Gallego, I.3
  • 43
    • 33746308149 scopus 로고    scopus 로고
    • Positive effects of tertiary centres for amyotrophic lateral sclerosis on outcome and use of hospital facilities
    • Chio A,Bottacchi A,Buffa C,Mutani R,Mora G.Positive effects of tertiary centres for amyotrophic lateral sclerosis on outcome and use of hospital facilities.J Neurol Neurosurg Psychiatry. 2006;77 (8): 948-950.
    • (2006) J Neurol Neurosurg Psychiatry , vol.77 , Issue.8 , pp. 948-950
    • Chio, A.1    Bottacchi, A.2    Buffa, C.3    Mutani, R.4    Mora, G.5
  • 44
    • 27144448387 scopus 로고    scopus 로고
    • Multidisciplinary ALS care improves quality of life in patients with ALS
    • Van den Berg JP,Kalmijn S,Lindeman E, et al.Multidisciplinary ALS care improves quality of life in patients with ALS.Neurology. 2005;65 (8): 1264-1267.
    • (2005) Neurology , vol.65 , Issue.8 , pp. 1264-1267
    • van den Berg, J.P.1    Kalmijn, S.2    Lindeman, E.3
  • 46
    • 0035289444 scopus 로고    scopus 로고
    • The importance of multifactorial rehabilitation treatment in amyotrophic lateral sclerosis
    • Calzada-Sierra DJ,Gomez Fernandez L.The importance of multifactorial rehabilitation treatment in amyotrophic lateral sclerosis.Revista de Neurologia. 2001;32 (5): 423-426.
    • (2001) Revista De Neurologia , vol.32 , Issue.5 , pp. 423-426
    • Calzada-Sierra, D.J.1    Gomez Fernandez, L.2
  • 47
    • 34548397674 scopus 로고    scopus 로고
    • ALS multidisciplinary clinic and survival; results from a population-based study in Southern Italy
    • Zoccolella S,Beghi E,Palagano G, et al.ALS multidisciplinary clinic and survival; results from a population-based study in Southern Italy.J Neurol. 2007;254 (8): 1107-1012.
    • (2007) J Neurol , vol.254 , Issue.8 , pp. 1012-1107
    • Zoccolella, S.1    Beghi, E.2    Palagano, G.3
  • 49
    • 60849087671 scopus 로고    scopus 로고
    • Outcomes research in amyotrophic lateral sclerosis: lessons learned from the amyotrophic lateral sclerosis clinical assessment, research, and education database
    • Miller RG,Anderson F,Brooks BR,Mitsumoto H,Bradley WG,Ringel SP.Outcomes research in amyotrophic lateral sclerosis: lessons learned from the amyotrophic lateral sclerosis clinical assessment, research, and education database.Ann Neurol. 2009;65 (suppl 1): S24-S28.
    • (2009) Ann Neurol , vol.65 , Issue.SUPPL. 1
    • Miller, R.G.1    Anderson, F.2    Brooks, B.R.3    Mitsumoto, H.4    Bradley, W.G.5    Ringel, S.P.6
  • 50
    • 70350149848 scopus 로고    scopus 로고
    • 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
    • Miller RG,Jackson CE,Kasarskis EJ, et al.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. 2009;73 (15): 1218-1226.
    • (2009) Neurology , vol.73 , Issue.15 , pp. 1218-1226
    • Miller, R.G.1    Jackson, C.E.2    Kasarskis, E.J.3
  • 51
    • 70350138259 scopus 로고    scopus 로고
    • Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioural impairment (an evidence-based review): report of the quality standards subcommittee of the American academy of neurology
    • Miller RG,Jackson CE,Kasarskis EJ, et al.Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioural impairment (an evidence-based review): report of the quality standards subcommittee of the American academy of neurology.Neurology. 2009;73 (15): 1227-1233.
    • (2009) Neurology , vol.73 , Issue.15 , pp. 1227-1233
    • Miller, R.G.1    Jackson, C.E.2    Kasarskis, E.J.3
  • 52
    • 34547562663 scopus 로고    scopus 로고
    • Good practice in the management of amyotrophic lateral sclerosis: clinical guidelines. An evidence-based review with good practice points. EALSC working group
    • Andersen PM,Borasio GD,Dengler R, et al.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. 2007;8 (4): 195-213.
    • (2007) Amyotroph Lateral Scler , vol.8 , Issue.4 , pp. 195-213
    • Andersen, P.M.1    Borasio, G.D.2    Dengler, R.3
  • 53
    • 0033981057 scopus 로고    scopus 로고
    • The ALS patient care database: goals, design, and early results
    • Miller RG,Anderson FA,Bradley WG, et al.The ALS patient care database: goals, design, and early results.Neurology. 2000;54 (1): 53-57.
    • (2000) Neurology , vol.54 , Issue.1 , pp. 53-57
    • Miller, R.G.1    Anderson, F.A.2    Bradley, W.G.3
  • 54
    • 67049145001 scopus 로고    scopus 로고
    • Defining survival as an outcome measure in amyotrophic lateral sclerosis
    • Gordon PH,Corcia P,Lacomblez L, et al.Defining survival as an outcome measure in amyotrophic lateral sclerosis.Arch Neurol. 2009;66 (6): 758-761.
    • (2009) Arch Neurol , vol.66 , Issue.6 , pp. 758-761
    • Gordon, P.H.1    Corcia, P.2    Lacomblez, L.3
  • 56
    • 0032092922 scopus 로고    scopus 로고
    • Satisfaction with palliative care: what should we be aware of?
    • Fakhoury WK.Satisfaction with palliative care: what should we be aware of?.Int J Nurs Stud. 1998;35 (3): 171-176.
    • (1998) Int J Nurs Stud , vol.35 , Issue.3 , pp. 171-176
    • Fakhoury, W.K.1
  • 57
    • 0026562529 scopus 로고
    • Individual quality of life in patients undergoing hip replacement
    • O'Boyle CA,McGee HM,Hickey A,O'Malley K.Individual quality of life in patients undergoing hip replacement.Lancet. 1992;339 (8801): 1088-1091.
    • (1992) Lancet , vol.339 , Issue.8801 , pp. 1088-1091
    • O'Boyle, C.A.1    McGee, H.M.2    Hickey, A.3    O'Malley, K.4
  • 58
    • 0029999423 scopus 로고    scopus 로고
    • A new short form individual quality of life measure (SEIQol-DW): application in a cohort of individuals with HIV/AIDS
    • Hickey AM,Bury G,O'Boyle A,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. 1996;313 (7048): 29-33.
    • (1996) BMJ , vol.313 , Issue.7048 , pp. 29-33
    • Hickey, A.M.1    Bury, G.2    O'Boyle, A.3    Bradley, F.4    O'Kelly, F.D.5    Shannon, W.6
  • 59
    • 0029033658 scopus 로고
    • The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced diseases. A preliminary study of validity and acceptability
    • Cohen SR,Mount BM,Strobel MG,Bui F.The McGill quality of life questionnaire: a measure of quality of life appropriate for people with advanced diseases. A preliminary study of validity and acceptability.Palliat Med. 1995;9 (3): 207-219.
    • (1995) Palliat Med , vol.9 , Issue.3 , pp. 207-219
    • Cohen, S.R.1    Mount, B.M.2    Strobel, M.G.3    Bui, F.4
  • 60
    • 33750968193 scopus 로고    scopus 로고
    • The ALSSQOL. Balancing physical and non-physical factors in assessing quality of life in ALS
    • Simmons Z,Felgoise SH,Bremer BA, et al.The ALSSQOL. Balancing physical and non-physical factors in assessing quality of life in ALS.Neurology. 2006;67 (9): 1659-1664.
    • (2006) Neurology , vol.67 , Issue.9 , pp. 1659-1664
    • Simmons, Z.1    Felgoise, S.H.2    Bremer, B.A.3
  • 61
    • 40849120555 scopus 로고    scopus 로고
    • The Schedule for Meaning in Life Evaluation (SMiLE): validation of a new instrument for meaning-in-life research
    • Fegg MJ,Kramer M,L'hoste S,Borasio GD.The Schedule for Meaning in Life Evaluation (SMiLE): validation of a new instrument for meaning-in-life research.J Pain Symptom Manage. 2008;35 (4): 356-364.
    • (2008) J Pain Symptom Manage , vol.35 , Issue.4 , pp. 356-364
    • Fegg, M.J.1    Kramer, M.2    L'hoste, S.3    Borasio, G.D.4
  • 62
    • 0034824554 scopus 로고    scopus 로고
    • Assessing individual quality of life in amyotrophic lateral sclerosis
    • Clarke S,Hickey A,O'Boyle C,Hardiman O.Assessing individual quality of life in amyotrophic lateral sclerosis.Qual Life Res. 2001;10 (2): 149-158.
    • (2001) Qual Life Res , vol.10 , Issue.2 , pp. 149-158
    • Clarke, S.1    Hickey, A.2    O'Boyle, C.3    Hardiman, O.4
  • 63
    • 7244254230 scopus 로고    scopus 로고
    • A cross sectional study on determinants of quality of life in ALS
    • Chio A,Gauthier A,Montuschi A, et al.A cross sectional study on determinants of quality of life in ALS.J Neurol Neurosurg Psychiatry. 2004;75 (11): 1597-1601.
    • (2004) J Neurol Neurosurg Psychiatry , vol.75 , Issue.11 , pp. 1597-1601
    • Chio, A.1    Gauthier, A.2    Montuschi, A.3
  • 64
    • 77956638379 scopus 로고    scopus 로고
    • Meaning in life in patients with amyotrophic lateral sclerosis
    • Fegg MJ,Kogler M,Brandstatter M, et al.Meaning in life in patients with amyotrophic lateral sclerosis.Amyotroph Lateral Scler. 2010;11 (5): 469-474.
    • (2010) Amyotroph Lateral Scler , vol.11 , Issue.5 , pp. 469-474
    • Fegg, M.J.1    Kogler, M.2    Brandstatter, M.3
  • 65
    • 46749143688 scopus 로고    scopus 로고
    • Quality of life in amyotrophic lateral sclerosis
    • Bromberg MB.Quality of life in amyotrophic lateral sclerosis.Phys Med Rehabil Clin N Am. 2008;19 (3): 591-605.
    • (2008) Phys Med Rehabil Clin N Am , vol.19 , Issue.3 , pp. 591-605
    • Bromberg, M.B.1
  • 67
    • 27844588492 scopus 로고    scopus 로고
    • Patient satisfaction in the disease management industry
    • Sen S,Fawson P,Cherrington G, et al.Patient satisfaction in the disease management industry.Dis Manag. 2005;8 (5): 288-300.
    • (2005) Dis Manag , vol.8 , Issue.5 , pp. 288-300
    • Sen, S.1    Fawson, P.2    Cherrington, G.3
  • 68
    • 0038505310 scopus 로고    scopus 로고
    • Using satisfaction to measure the quality of palliative care: a review of the literature
    • Aspinal F,Addington-Hall J,Hughes R,Higginson IJ.Using satisfaction to measure the quality of palliative care: a review of the literature.J Adv Nurs. 2003;42 (4): 324-339.
    • (2003) J Adv Nurs , vol.42 , Issue.4 , pp. 324-339
    • Aspinal, F.1    Addington-Hall, J.2    Hughes, R.3    Higginson, I.J.4
  • 69
    • 16544394852 scopus 로고    scopus 로고
    • Assessing palliative care outcomes for people with motor neurone disease living at home
    • Hughes RA,Aspinal F,Higginson IJ, et al.Assessing palliative care outcomes for people with motor neurone disease living at home.Int J Palliat Nurs. 2004;10 (9): 449-453.
    • (2004) Int J Palliat Nurs , vol.10 , Issue.9 , pp. 449-453
    • Hughes, R.A.1    Aspinal, F.2    Higginson, I.J.3
  • 70
    • 72049096691 scopus 로고    scopus 로고
    • Patients' with ALS and caregivers' experiences of non-invasive home ventilation
    • Sundling IM,Ekman SL,Weinberg J,Klefbeck B.Patients' with ALS and caregivers' experiences of non-invasive home ventilation.Adv Physio. 2009;11 (3): 114-120.
    • (2009) Adv Physio , vol.11 , Issue.3 , pp. 114-120
    • Sundling, I.M.1    Ekman, S.L.2    Weinberg, J.3    Klefbeck, B.4
  • 71
    • 77957002885 scopus 로고    scopus 로고
    • Amyotrophic lateral sclerosis and assisted ventilation: How patients decide
    • Lemoignan J,Ells C.Amyotrophic lateral sclerosis and assisted ventilation: How patients decide.Palliat Support Care. 2010;8 (2): 207-213.
    • (2010) Palliat Support Care , vol.8 , Issue.2 , pp. 207-213
    • Lemoignan, J.1    Ells, C.2
  • 72
    • 0028541388 scopus 로고
    • Amyotrophic lateral sclerosis patients' perspectives on use of mechanical ventilation
    • Young JM,Marshall CL,Anderson EJ.Amyotrophic lateral sclerosis patients' perspectives on use of mechanical ventilation.Health Soc Work. 1994;19 (4): 253-260.
    • (1994) Health Soc Work , vol.19 , Issue.4 , pp. 253-260
    • Young, J.M.1    Marshall, C.L.2    Anderson, E.J.3
  • 73
    • 0035666375 scopus 로고    scopus 로고
    • Existential issues in palliative care: interviews of patients with amyotrophic lateral sclerosis
    • Bolmsjo I.Existential issues in palliative care: interviews of patients with amyotrophic lateral sclerosis.J Palliat Med. 2001;4:499-505.
    • (2001) J Palliat Med , vol.4 , pp. 499-505
    • Bolmsjo, I.1
  • 74
    • 33750443508 scopus 로고    scopus 로고
    • User, carer, and professional experiences of care in motor neurone disease
    • Brown JB.User, carer, and professional experiences of care in motor neurone disease.Prim Health Care Research Devel. 2003;4 (3): 207-217.
    • (2003) Prim Health Care Research Devel , vol.4 , Issue.3 , pp. 207-217
    • Brown, J.B.1
  • 76
    • 0033023538 scopus 로고    scopus 로고
    • Clinical understanding and clinical implications of response shift
    • Wilson I.Clinical understanding and clinical implications of response shift.Soc Sci Med. 1999;45 (11): 1577-1588.
    • (1999) Soc Sci Med , vol.45 , Issue.11 , pp. 1577-1588
    • Wilson, I.1
  • 77
    • 0034185372 scopus 로고    scopus 로고
    • An exploration of the epistemological intricacies of using qualitative data to develop a quantitative measure of user views of health care
    • Coyle J,Williams B.An exploration of the epistemological intricacies of using qualitative data to develop a quantitative measure of user views of health care.J Adv Nurs. 2000;31 (5): 1235-1243.
    • (2000) J Adv Nurs , vol.31 , Issue.5 , pp. 1235-1243
    • Coyle, J.1    Williams, B.2
  • 78
    • 34548292003 scopus 로고    scopus 로고
    • Effect of referral bias on assessing survival in ALS
    • Logroscino G,Beghi E,Hardiman O, et al.Effect of referral bias on assessing survival in ALS.Neurology. 2007;69 (9): 939 939-940.
    • (2007) Neurology , vol.69 , Issue.9 , pp. 939-940
    • Logroscino, G.1    Beghi, E.2    Hardiman, O.3


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