scholarly journals Dignity Therapy for People with Motor Neuron Disease and Their Family Caregivers: A Feasibility Study

2015 ◽  
Vol 18 (1) ◽  
pp. 31-37 ◽  
Author(s):  
Samar M. Aoun ◽  
Harvey M. Chochinov ◽  
Linda J. Kristjanson
Keyword(s):  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Family Caregivers ◽  
Feasibility Study ◽  
Dignity Therapy

Family Caregivers’ Experiences with Dying and Bereavement of Individuals with Motor Neuron Disease in India

2019 ◽  
Vol 15 (2-3) ◽  
pp. 111-125 ◽  
Author(s):  
Manjusha G. Warrier ◽  
Priya Treesa Thomas ◽  
Arun Sadasivan ◽  
Bhuvaneshwari Balasubramaniam ◽  
Seena Vengalil ◽  
...  
Keyword(s):  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Family Caregivers

scholarly journals Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e028525 ◽  
Author(s):  
Esther V Hobson ◽  
Wendy O Baird ◽  
Mike Bradburn ◽  
Cindy Cooper ◽  
Susan Mawson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Data Collection ◽  
Motor Neuron ◽  
Usual Care ◽  
Motor Neuron Disease ◽  
Outcome Measures ◽  
Feasibility Study ◽  
Definitive Trial ◽  
Randomised Controlled

ObjectivesCare of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM) in patients with MND.DesignAn 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study.InterventionTiM telehealth plus usual care versus usual care.SettingA specialist MND care centre in the UK.ParticipantsPatients with MND and their primary informal carers.Primary and secondary outcome measuresRecruitment, retention and data collection rates, clinical outcomes including participant quality of life and anxiety and depression.ResultsRecruitment achieved the target of 40 patients and 37 carers. Participant characteristics reflected those attending the specialist clinic and included those with severe disability and those with limited experience of technology. Retention and data collection was good. Eighty per cent of patients and 82% of carer participants reported outcome measures were completed at 6 months. Using a longitudinal analysis with repeated measures of quality of life (QoL), a sample size of 131 per arm is recommended in a definitive trial. The methods and intervention were acceptable to participants who were highly motivated to participate to research. The low burden of participation and accessibility of the intervention meant barriers to participation were minimal. However, the study highlighted difficulties assessing the associated costs of the intervention, the challenge of recruitment in such a rare disease and the difficulties of producing rigorous evidence of impact in such a complex intervention.ConclusionA definitive trial of TiM is feasible but challenging. The complexity of the intervention and heterogeneity of the patient population means that a randomised controlled trial may not be the best way to evaluate the further development and implementation of the TiM.Trial registration numberISRCTN26675465.

Thr124Met myelin protein zero mutation mimicking motor neuron disease

2021 ◽  
pp. 1-6
Author(s):  
Giulia Bisogni ◽  
Angela Romano ◽  
Amelia Conte ◽  
Giorgio Tasca ◽  
Daniela Bernardo ◽  
...  
Keyword(s):  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Myelin Protein ◽  
Myelin Protein Zero ◽  
Protein Zero

Late onset Sandhoff disease presenting with lower motor neuron disease and stuttering

2021 ◽  
Author(s):  
Jorge Alonso-Pérez ◽  
Ana Casasús ◽  
Álvaro Gimenez-Muñoz ◽  
Jennifer Duff ◽  
Ricard Rojas-Garcia ◽  
...  
Keyword(s):  
Motor Neuron ◽  
Motor Neuron Disease ◽  
Late Onset ◽  
Sandhoff Disease ◽  
Lower Motor Neuron ◽  
Lower Motor Neuron Disease
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