Abstract:
OBJECTIVES:An increasing number of patients with motor neuron disease (MND) in the UK and Ireland use assisted ventilation, and a small proportion of these use long-term tracheostomy ventilation (TV).1 2 NICE guidelines recommend that patients with MND should routinely receive specialist palliative care input.3 The aim was to establish the extent to which hospices and specialist palliative care units (SPCUs) in the UK and Ireland currently manage patients with MND using assisted ventilation especially TV and to identify any associated barriers. METHODS:A 25-item questionnaire was developed in Survey Monkey. A link to the questionnaire was emailed to every medical director (n=185) of inpatient hospices/SPCUs in the UK and Ireland. RESULTS:The response rate was 42.4% (n=78). 97.4% of units admit patients with MND on non-invasive ventilation (NIV), but only 28.2% admit those using TV. 80.8% of units have adequate expertise in the management of NIV, compared with 7.7% for managing TV. 35.9% and 2.6% of units have a policy for managing patients using NIV and TV, respectively. 14.1% respondents had been involved in the care of patients with MND using TV, in the specialist palliative care setting in the last 5 years. CONCLUSIONS:A minority of UK and Irish hospices/SPUs provide support to TV MND patients and few units currently have management or admission policies for this cohort of patients. Respondents indicated a lack of appropriate expertise and experience. Further exploration of these barriers is required to establish how to optimise care for TV MND patients in this setting.
journal_name
BMJ Support Palliat Carejournal_title
BMJ supportive & palliative careauthors
Gleeson A,Johnson Fdoi
10.1136/bmjspcare-2018-001672subject
Has Abstractpub_date
2020-09-01 00:00:00pages
358-362issue
3eissn
2045-435Xissn
2045-4368pii
bmjspcare-2018-001672journal_volume
10pub_type
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journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001541
更新日期:2019-12-01 00:00:00
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journal_title:BMJ supportive & palliative care
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journal_title:BMJ supportive & palliative care
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journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001652
更新日期:2019-12-01 00:00:00
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journal_title:BMJ supportive & palliative care
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journal_title:BMJ supportive & palliative care
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journal_title:BMJ supportive & palliative care
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journal_title:BMJ supportive & palliative care
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journal_title:BMJ supportive & palliative care
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journal_title:BMJ supportive & palliative care
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journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
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journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
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journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
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