Development a paediatric and adult home based assessment tool for monitoring symptoms of myasthenic syndromes.

Background

The home assessment tool will enable patients or carers to objectively measure changes in function and fluctuations in symptoms. This will allow patients to:

• make appropriate changes to medication levels (if self-managed)
• or seek timely medical advice with the aim to avoid myasthenic crisis

Research question

Can home based assessment of muscle performance measure fluctuations in muscle function in different types of MG?

Primary objective

To establish reliable assessments for measuring the magnitude and variations of fatigability and muscle strength in MG patients.

Study information

The study has different phases and aims:

1. Analysis of current clinical assessments to identify which aspects best measure fatigability and muscle performance

2. Conducting semi structured interviews to identify specific functional difficulties experienced by patient groups

3. Identify required assessments for different types of MG

4. Development of a home-based assessment tool

5. Pilot of home-based assessment tool