Validation of the MPF7 scale in Myaesthenia_version 1
Research type
Research Study
Full title
Acceptability and validity of the MPF7 scale, a Rasch-built self-monitoring tool for people living with Myasthenia
IRAS ID
325758
Contact name
Gita Ramdharry
Contact email
Sponsor organisation
University College London
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
The ability to self-measure fluctuations in symptoms, whether temporary or established, may allow patients to respond with appropriate changes to medication levels (if self-managed). This would be similar to other long term conditions e.g. blood sugar monitoring in diabetes, rather than waiting for clinical review. Thus, patients may be able to respond to fluctuations in muscle performance and adjust their activity level accordingly.
This study aims to establish whether the previously designed 'MPF7' questionnaire is an acceptable home-based assessment of muscle performance fluctuations in adults with Myasthenia Gravis (MG), and whether it is a feasible way for patients to self-monitor. Participants will be recruited and trained on how to perform the assessment tool at home. They will then self-administer the tool once a week for 8 weeks. Every 2 weeks, the patient will be contacted by telephone for remote data collection and for a brief semi-structured interview about their experience with their condition and use of the MPF7. The study also aims to assess the validity of the MPF7, and the scores will be compared to current measures of functioning for patients with MG: MGQOL and MG-ADL.
REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
24/WM/0090
Date of REC Opinion
25 Apr 2024
REC opinion
Further Information Favourable Opinion