The Respiratory Assessment of Patients with Motor Neurone Disease around the Time of Diagnosis: A Regional Survey of Consultant Neurologists in the UK.

Author(s):  
A Atalla ◽  
PD Hughes
1996 ◽  
Vol 3 (4) ◽  
pp. 317-328 ◽  
Author(s):  
Michele Anne Kent

This paper focuses on the ethical dilemmas created by advanced technology that would allow patients with motor neurone disease to be sustained by artificial ventilation. The author attempts to support the patient's right to informed choice, arguing from the perspective of autonomy as a first order principle. The counter arguments of caregiver burden and financial restraints are analysed. In the UK, where active euthanasia is not legalized, the dilemma of commencing ventilation is seen to be outweighed by the problems of withdrawing this treatment. The lack of accurate data and protocols that would clarify the current situation is emphasized and the conclusion takes the form of a recommendation for further research.


BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e044724
Author(s):  
Cathryn Pinto ◽  
Adam W A Geraghty ◽  
Lucy Yardley ◽  
Laura Dennison

ObjectiveWe aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.DesignQualitative study using semi-structured interviews with people with MND and caregivers.SettingParticipants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.Participants25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.Data analysisData were analysed using inductive reflexive thematic analysis.ResultsEight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.ConclusionThe study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.


Author(s):  
Grace X Chen ◽  
Andrea’t Mannetje ◽  
Jeroen Douwes ◽  
Leonard H Berg ◽  
Neil Pearce ◽  
...  

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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