PONM10 Motor neurone disease. Experience and expectations of patients and care givers

Motor neurone disease (MND) is a rare progressive neurodegenerative disease which results in muscle weakness reduced mobility dysphagia and speech and breathing difficulties with no curative treatment or remission where 50% of patients die within three years of their first symptom and many dying within a year of diagnosis (Whitehead et al. 2012 Wood-Allum 2014). Access to palliative care for people with motor neurone disease (MND) is an area of concern for the person with the condition as well as the carers supporting them (NICE 2016). This literature review examines the specific challenges in palliative care for people with MND and their carers.A systematic search was undertaken of the literature yielding 534 articles. This was reduced by inclusion and exclusion criteria to 43 articles which were selected for critical appraisal for their relevance to the topic using MacKenzie et al’s (2010) quality review tool resulting. 16 articles were themed using Thomas and Harden’s (2008) thematic analysis approach.Four themes emerged from the literature: the specific needs of carers of people with MND; Service provision; hope and depression and ethical decision-making.Despite a lack of quantifiable data relating to specialist palliative care to improve palliative outcomes in people with MND the literature shows that MND patents and their care-givers have a great need for integrated services which are equipped to deal with their very specific needs. The management of hope and depression should form an integral part of the palliative care provision. Advance care planning offers a framework to support communication between services and families. The symptoms experienced at end of life require specialist skills to manage and needs the support of a multidisciplinary team.References. Whitehead B, O’Brien MR, Jack BA, Mitchell D. Experiences of dying death and bereavement in motor neurone disease: a qualitative study.Palliative Medicine [online] 2012;26(4):368–78. Available from: MEDLINE. Wood-Allum CA. Unanswered questions and barriers to research in the palliative care of motor neurone disease patients. Journal of Palliative Care [online] 2014;30(4):302–306. Available from: Academic Search Complete. NICE. Motor neurone disease: assessment and management NICE guidelines [NG42] [online]2016. Available from: https://www.nice.org.uk/guidance/cg105

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Frontotemporal dementia and mild cognitive impairment in motor neurone disease

PsycEXTRA Dataset ◽

10.1037/e578362014-031 ◽

2009 ◽

Author(s):

S. Tsermentseli

Keyword(s):

Cognitive Impairment ◽

Mild Cognitive Impairment ◽

Frontotemporal Dementia ◽

Motor Neurone ◽

Motor Neurone Disease

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Motor Neurone Disease - Systematic Multi-Arm Adaptive Randomised Trial

Case Medical Research ◽

10.31525/ct1-nct04302870 ◽

2020 ◽

Author(s):

Keyword(s):

Randomised Trial ◽

Motor Neurone ◽

Motor Neurone Disease

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Occupational Exposure to Electric Shocks and Extremely Low-Frequency Magnetic Fields and Motor Neurone Disease

American Journal of Epidemiology ◽

10.1093/aje/kwaa214 ◽

2020 ◽

Author(s):

Grace X Chen ◽

Andrea’t Mannetje ◽

Jeroen Douwes ◽

Leonard H Berg ◽

Neil Pearce ◽

...

Keyword(s):

Occupational Exposure ◽

Magnetic Fields ◽

Low Frequency ◽

Population Based ◽

Motor Neurone ◽

Motor Neurone Disease ◽

Cumulative Exposure ◽

Spine Injury ◽

Extremely Low Frequency ◽

Electric Shocks

Abstract In a New Zealand population-based case-control study we assessed associations with occupational exposure to electric shocks, extremely low-frequency magnetic fields (ELF-MF) and motor neurone disease using job-exposure matrices to assess exposure. Participants were recruited between 2013 and 2016. Associations with ever/never, duration, and cumulative exposure were assessed using logistic regression adjusted for age, sex, ethnicity, socioeconomic status, education, smoking, alcohol consumption, sports, head or spine injury and solvents, and mutually adjusted for the other exposure. All analyses were repeated stratified by sex. An elevated risk was observed for having ever worked in a job with potential for electric shocks (odds ratio (OR)=1.35, 95% confidence interval (CI): 0.98, 1.86), with the strongest association for the highest level of exposure (OR=2.01, 95%CI: 1.31, 3.09). Analysis by duration suggested a non-linear association: risk was increased for both short-duration (<3 years) (OR= 4.69, 95%CI: 2.25, 9.77) and long-duration in a job with high level of electric shock exposure (>24 years; OR=1.88; 95%CI: 1.05, 3.36), with less pronounced associations for intermediate durations. No association with ELF-MF was found. Our findings provide support for an association between occupational exposure to electric shocks and motor neurone disease but did not show associations with exposure to work-related ELF-MF.

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