Abstract：
:The objective was to identify factors associated with decisions made by patients with amyotrophic lateral sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study. Twenty-one people with ALS, recruited from the South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to-face in-depth interview, with or without their informal caregiver present. Sixteen had accepted an intervention (11 accepted gastrostomy, four accepted NIV and one accepted both interventions). Five patients had declined gastrostomy. Thematic analysis revealed three main themes: (1) patient-centric factors (including perceptions of control, acceptance and need, and aspects of fear); (2) external factors (including roles played by healthcare professionals, family, and information provision); and (3) the concept of time (including living in the moment and the notion of 'right thing, right time'). Many aspects of these factors were inter-related. Decision-making processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised (rather than 'algorithm-based') approaches to facilitating decision-making by people with ALS who require palliative interventions.
journal_name
J Neuroljournal_title
Journal of neurologyauthors
Greenaway LP,Martin NH,Lawrence V,Janssen A,Al-Chalabi A,Leigh PN,Goldstein LHdoi
10.1007/s00415-015-7665-zsubject
Has Abstractpub_date
2015-01-01 00:00:00pages
1002-13issue
4eissn
0340-5354issn
1432-1459journal_volume
262pub_type
杂志文章abstract：:Familial paroxysmal exercise-induced dyskinesia (PED) is a rare movement disorder that is mostly caused by mutations in the solute carrier family 2, member 1 (SLC2A1) gene and inherited in an autosomal dominant manner. Clinical, laboratory, and genetic studies were performed in three family members. The proband's symp...
journal_title：Journal of neurology
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journal_title：Journal of neurology
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abstract：:Additional autoimmune diseases in people with multiple sclerosis (MS) and their relatives have been studied many times. Studies have employed different designs, and yielded conflicting results. We performed a systematic review, and calculated overall risk of additional autoimmune diseases in people with MS and their f...
journal_title：Journal of neurology
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abstract：:A boy was suspected of having meningoencephalitis probably of viral origin, although all microbiological, including virological, tests were negative. Postmortem examination revealed a dissecting aortic aneurysm and disseminated intravascular coagulation involving the central nervous system exclusively. The clinical ev...
journal_title：Journal of neurology
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abstract：:Myasthenia gravis patients usually present with fluctuating, asymmetrical stress-dependent weakness in the absence of other neurological disturbances. In weak patients psychopathological disturbances are frequently reported and misdiagnosed as a psychiatric disorder. The question to what extent psychiatric symptoms ar...
journal_title：Journal of neurology
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journal_title：Journal of neurology
pub_type： 杂志文章
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journal_title：Journal of neurology
pub_type： 临床试验,杂志文章
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journal_title：Journal of neurology
pub_type： 杂志文章
doi：10.1007/BF00314766
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journal_title：Journal of neurology
pub_type： 杂志文章
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journal_title：Journal of neurology
pub_type： 杂志文章,评审
doi：10.1007/s00415-003-1103-1
更新日期：2003-02-01 00:00:00
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journal_title：Journal of neurology
pub_type： 杂志文章
doi：10.1007/BF00313744
更新日期：1981-01-01 00:00:00
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journal_title：Journal of neurology
pub_type： 杂志文章,meta分析,评审
doi：10.1007/s00415-011-6164-0
更新日期：2012-03-01 00:00:00
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journal_title：Journal of neurology
pub_type： 杂志文章
doi：10.1007/BF00312541
更新日期：1975-07-02 00:00:00
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pub_type： 杂志文章
doi：10.1007/s00415-020-10172-3
更新日期：2020-08-31 00:00:00
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journal_title：Journal of neurology
pub_type： 杂志文章,评审
doi：10.1007/s00415-002-1307-y
更新日期：2002-10-01 00:00:00
abstract：:Prolonged clinico-immunological observation of 85 patients with definite multiple sclerosis (MS) was performed in order to elucidate the connections between the clinical and immune state. A battery of immunological investigations was performed, including estimation of T-cell subpopulations in blood and cerebrospinal f...
journal_title：Journal of neurology
pub_type： 杂志文章
doi：10.1007/BF00919713
更新日期：1994-07-01 00:00:00
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journal_title：Journal of neurology
pub_type： 杂志文章
doi：10.1007/BF00862981
更新日期：1992-02-01 00:00:00
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pub_type： 杂志文章,评审
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journal_title：Journal of neurology
pub_type： 杂志文章
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pub_type： 杂志文章,评审
doi：10.1007/s00415-010-5667-4
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journal_title：Journal of neurology
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doi：10.1007/BF00313272
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journal_title：Journal of neurology
pub_type： 杂志文章
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journal_title：Journal of neurology
pub_type： 信件
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更新日期：2019-07-01 00:00:00
