메뉴 건너뛰기




Volumn 12, Issue 2, 2011, Pages 97-104

From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): Experiences of people with ALS/MND and family carers - A qualitative study

Author keywords

Amyotrophic lateral sclerosis motor neuron disease; diagnostic experiences; personal perspectives; qualitative research

Indexed keywords

ADULT; AGED; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; CAREGIVER; CONTROLLED STUDY; DELAYED DIAGNOSIS; FAMILY; FEMALE; HEALTH CARE PERSONNEL; HUMAN; INTERVIEW; MAJOR CLINICAL STUDY; MALE; MOTOR NEURON DISEASE; PERSONAL EXPERIENCE; PRIMARY LATERAL SCLEROSIS; PRIORITY JOURNAL; PROGRESSIVE BULBAR PALSY; PROGRESSIVE MUSCULAR ATROPHY; QUALITATIVE RESEARCH; SYMPTOM;

EID: 79951737325     PISSN: 17482968     EISSN: 1471180X     Source Type: Journal    
DOI: 10.3109/17482968.2010.546414     Document Type: Article
Times cited : (73)

References (35)
  • 1
    • 0032836044 scopus 로고    scopus 로고
    • Motor neurone disease: A review of its emotional and cognitive consequences for patients and its impact on carers
    • DOI 10.1348/135910799168579
    • Goldstein LH, Leigh PN. Motor neuron disease: a review of its emotional and cognitive consequences for patients and its impact on carers. British Journal of Health Psychology. 1999;4:193-208. (Pubitemid 29425534)
    • (1999) British Journal of Health Psychology , vol.4 , Issue.3 , pp. 193-208
    • Goldstein, L.H.1    Leigh, P.N.2
  • 2
    • 0032726919 scopus 로고    scopus 로고
    • ISIS Survey: An international study on the diagnostic process and its implications in amyotrophic lateral sclerosis
    • Chio A. ISIS Survey: an international study on the diagnostic process and its implications in amyotrophic lateral sclerosis. J Neurol. 1999;246(Suppl 3):1-5.
    • (1999) J Neurol , vol.246 , Issue.SUPPL. 3 , pp. 1-5
    • Chio, A.1
  • 3
    • 0013321689 scopus 로고    scopus 로고
    • Risk factors in the early diagnosis of ALS: European Epidemiological Studies
    • Chio A. Risk factors in the early diagnosis of ALS: European Epidemiological Studies. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:13-8.
    • (2000) Amyotroph Lateral Scler Other Motor Neuron Disord , vol.1 , pp. 13-18
    • Chio, A.1
  • 5
    • 38549084065 scopus 로고    scopus 로고
    • Timeliness of diagnosis in Motor Neurone Disease: A population-based study
    • Donaghy C, Dick A, Hardiman O, Patterson V. Timeliness of diagnosis in motor neuron disease: a population based study. Ulster Med J. 2008;77:18-21. (Pubitemid 351148701)
    • (2008) Ulster Medical Journal , vol.77 , Issue.1 , pp. 18-21
    • Donaghy, C.1    Dick, A.2    Hardiman, O.3    Patterson, V.4
  • 6
    • 60849106964 scopus 로고    scopus 로고
    • Racing against the clock: Recognizing, differentiating and referring the ALS patient
    • Shook S, Pioro E. Racing against the clock: recognizing, differentiating and referring the ALS patient. Ann Neurol. 2009;65:S10 - 6.
    • (2009) Ann Neurol , vol.65
    • Shook, S.1    Pioro, E.2
  • 7
    • 74149089632 scopus 로고    scopus 로고
    • Diagnostic problems and delay in amyotrophic lateral sclerosis
    • Kraemer M, Bueger M, Belit P. Diagnostic problems and delay in amyotrophic lateral sclerosis. Clin Neurol Neurosurg. 2010;112:103-5.
    • (2010) Clin Neurol Neurosurg. , vol.112 , pp. 103-105
    • Kraemer, M.1    Bueger, M.2    Belit, P.3
  • 8
    • 0006468116 scopus 로고    scopus 로고
    • Effects of the early diagnosis of amyotrophic lateral sclerosis on the patient: Advantages
    • Gelinas D. Effects of the early diagnosis of amyotrophic lateral sclerosis on the patient: advantages. Amyotroph Lateral Scler. 2000;1:S73 - 4.
    • (2000) Amyotroph Lateral Scler , vol.1
    • Gelinas, D.1
  • 9
    • 0034326759 scopus 로고    scopus 로고
    • Diagnostic delay in amyotrophic lateral sclerosis: What scope for improvement?
    • Househam E, Swash M. Diagnostic delay in amyotrophic lateral sclerosis: what scope for improvement? J Neurol Sci. 2000;180:76-81.
    • (2000) J Neurol Sci , vol.180 , pp. 76-81
    • Househam, E.1    Swash, M.2
  • 10
    • 29244480266 scopus 로고    scopus 로고
    • EFNS task force on management of amyotrophic lateral sclerosis: Guidelines for diagnosing and clinical care of patients and relatives: An evidence-based review with good practice points
    • DOI 10.1111/j.1468-1331.2005.01351.x
    • Andersen PM, Borasio GD, Dengler R. EFNS Task Force on diagnosis and management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives. European Journal of Neurology. 2005;12: 921-38. (Pubitemid 41823891)
    • (2005) European Journal of Neurology , vol.12 , Issue.12 , pp. 921-938
    • Andersen, P.M.1    Borasio, G.D.2    Dengler, R.3    Hardiman, O.4    Kollewe, K.5    Leigh, P.N.6    Pradat, P.-F.7    Silani, V.8    Tomik, B.9
  • 12
    • 41449118875 scopus 로고    scopus 로고
    • Diagnosis and management of motor neurone disease
    • DOI 10.1136/bmj.39493.511759.BE
    • McDermott C, Shaw P. Diagnosis and management of motor neuron disease. Br Med J. 2008;336:658-62. (Pubitemid 351481237)
    • (2008) BMJ , vol.336 , Issue.7645 , pp. 658-662
    • McDermott, C.J.1    Shaw, P.J.2
  • 13
    • 0031755008 scopus 로고    scopus 로고
    • Breaking the news in amyotrophic lateral sclerosis
    • DOI 10.1016/S0022-510X(98)00211-1, PII S0022510X98002111
    • Borasio GD, Sloan R, Pongratz D. Breaking the news in amyotrophic lateral sclerosis. J Neurol Sci. 1998;160: S127 - 33. (Pubitemid 28522531)
    • (1998) Journal of the Neurological Sciences , vol.160 , Issue.SUPPL. 1
    • Borasio, G.D.1    Sloan, R.2    Pongratz, D.E.3
  • 18
    • 84855625497 scopus 로고    scopus 로고
    • The Impact of Familial Motor Neuron Disease
    • MND Association
    • MND Association. The Impact of Familial Motor Neuron Disease. Information Sheet, No. P2. 2007. http://tinyurl. com/m2uhv4 (accessed 18 December 2009).
    • (2007) Information Sheet, No. P2.
  • 19
    • 84855619671 scopus 로고    scopus 로고
    • MNDA
    • MNDA(2010)http://www.mndassociation.org/life-with- mnd/experiences-of- mnd/index.html. [accessed 24.05.10]
    • (2010)
  • 22
    • 33750452320 scopus 로고    scopus 로고
    • How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice
    • DOI 10.1080/14660820600601051, PII W6N120317JP1V65R
    • Hugel H, Grundy N, Rigby S, Young CA. How does current care practice infl uence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice. Amyotroph Lateral Scler. 2006;7: 161-6. (Pubitemid 44644570)
    • (2006) Amyotrophic Lateral Sclerosis , vol.7 , Issue.3 , pp. 161-166
    • Hugel, H.1    Grundy, N.2    Rigby, S.3    Young, C.A.4
  • 23
    • 0033594435 scopus 로고    scopus 로고
    • Correlates of suffering in amyotrophic lateral sclerosis
    • Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology. 1999;52: 1434.
    • (1999) Neurology , vol.52 , pp. 1434
    • Ganzini, L.1    Johnston, W.S.2    Hoffman, W.F.3
  • 24
    • 77649295135 scopus 로고    scopus 로고
    • Identifying poor adaptation to a new diagnosis of motor neuron disease. A pilot study into the value of an early patient-led interview
    • Hugel H, Pih N, Dougan CP, Rigby S, Young CA. Identifying poor adaptation to a new diagnosis of motor neuron disease. A pilot study into the value of an early patient-led interview. Amyotroph Lateral Scler. 2010;11:104-9.
    • (2010) Amyotroph Lateral Scler. , vol.11 , pp. 104-109
    • Hugel, H.1    Pih, N.2    Dougan, C.P.3    Rigby, S.4    Young, C.A.5
  • 26
    • 0242320965 scopus 로고    scopus 로고
    • Narrative research: A review of methodology and relevance to clinical practice
    • DOI 10.1016/j.critrevonc.2003.04.006
    • Overcash J. Narrative research: a review of methodology and relevance to clinical practice. Critical Reviews in Oncology/ Haematology. 2003;48:179-84. (Pubitemid 37357299)
    • (2003) Critical Reviews in Oncology/Hematology , vol.48 , Issue.2 , pp. 179-184
    • Overcash, J.A.1
  • 27
    • 84993783337 scopus 로고    scopus 로고
    • Thematic networks: An analytic tool for qualitative research
    • Attride-Sterling J. Thematic networks: an analytic tool for qualitative research. Qualitative Research. 2001;1: 385-405.
    • (2001) Qualitative Research , vol.1 , pp. 385-405
    • Attride-Sterling, J.1
  • 29
    • 0029029095 scopus 로고
    • Qualitative research: Reaching the parts other methods cannot reach. An introduction to qualitative methods in health and health services research
    • Pope C, Mays N. Qualitative research: reaching the parts other methods cannot reach. An introduction to qualitative methods in health and health services research. Br Med J. 1995;311:42-5.
    • (1995) Br Med J , vol.311 , pp. 42-45
    • Pope, C.1    Mays, N.2
  • 30
    • 0029008609 scopus 로고
    • Education and debate: Qualitative research. Rigour and qualitative research
    • Mays N, Pope C. Education and debate: qualitative research. Rigour and qualitative research. Br Med J. 1995;311: 109-12.
    • (1995) Br Med J , vol.311 , pp. 109-112
    • Mays, N.1    Pope, C.2
  • 32
    • 78649288936 scopus 로고    scopus 로고
    • Timelines in the diagnostic evaluation of people with suspected amyotrophic lateral sclerosis (ALS)/ motor neuron disease (MND) - A 20-year review: Can we do better?
    • Mitchell JD, Callagher P, Gardham J, Mitchell C, Dixon M, Addison-Jones R, et al. Timelines in the diagnostic evaluation of people with suspected amyotrophic lateral sclerosis (ALS)/ motor neuron disease (MND) - a 20-year review: Can we do better? ALS. 2010;11:537-41.
    • (2010) ALS. , vol.11 , pp. 537-541
    • Mitchell, J.D.1    Callagher, P.2    Gardham, J.3    Mitchell, C.4    Dixon, M.5    Addison-Jones, R.6
  • 35
    • 34447275959 scopus 로고    scopus 로고
    • Proof of love and other themes: A qualitative exploration of the experience of caring for people with motor neurone disease
    • DOI 10.1179/096992606X146354
    • Herz H, McKinnon M, Butow P. Proof of love and other themes: a qualitative exploration of the experience of caring for people with motor neuron disease. Progress in Palliative Care. 2006;14:209-14. (Pubitemid 47045800)
    • (2006) Progress in Palliative Care , vol.14 , Issue.5 , pp. 209-214
    • Herz, H.1    McKinnon, P.M.2    Butow, P.N.3


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.