Fatigue Management in Myasthenia Gravis
Research type
Research Study
Full title
A physical and psychological approach to improve fatigue in Myasthenia gravis: A pilot study
IRAS ID
202039
Contact name
Maria Elena/M.E. Farrugia
Contact email
Sponsor organisation
Research & Development, Greater Glasgow & Clyde
Duration of Study in the UK
0 years, 9 months, 26 days
Research summary
This study aims to address how to improve fatigue in patients with myasthenia gravis (MG) who may be still requiring some pharmacological treatment but whose disease is not felt to be active. Fatigue in patients with myasthenia gravis and indeed any other chronic neurological disorder can be as disabling, sometimes more than the actual disease. In this pilot study we aim to recruit 10 MG patients who would be amenable to introducing light exercise in their life and also addressing issues such as fatigue and pain management, and learning how to pace their lives in relation to their condition. These components will be led by the myasthenia nurse specialist and the neuromuscular physiotherapist. The programme will run over a 10 week period between March and June 2016. The myasthenia nurse specialist will consent all patients in the clinic in early 2017. She will assess all patients in the clinic before and after completion of the study, using the MG composite scale and the MG-QOL15r to assess their MG, HADS to assess their mood, the Modified Fatigue Impact Scale, the Fatigue Severity Scale and the Stanford fatigue scale to assess their fatigue. All 3 fatigue scales will be applied every fortnight during the programme to assess progress during the study. The neuromuscular physiotherapist will show the patients stretches, light aerobic activity, warm up and warm down and some endurance activity. The neuropsychologists will provide input at week 2,3,4, 7 and 8. During the programme there will be group discussion on fatigue management, pain management, improving sleep and healthy wellbeing. At 3 months after completion of exercise we will get in touch with the patients to re-evaluate them in the clinic. We will ask them specifically about any physical activities that them may have pursued since completing the study.
REC name
Wales REC 2
REC reference
16/WA/0197
Date of REC Opinion
8 Jul 2016
REC opinion
Further Information Favourable Opinion