Developing validated specific home based assessment tools for monitoring fluctuations in fatigability and muscle performance in adult and paediatric myasthenia patients (Victoria Selby, London)
The aim of this research is to develop and validate specific home based assessment tools for monitoring fluctuations in fatigability and muscle performance in adult and paediatric myasthenia patients. The first step is to identify and understand the physical challenges that patients living with myasthenia have to overcome.
We hope to recruit patients (10 adults and 5-10 children, aged between 5 and 18 years) to undertake a structured interview process. Analysis of the responses will identify recurrent themes which the original participants will be asked to reassess and comment upon. Based on these findings, assessment methods/tools will be selected that correlate to the themes identified. It is hoped that in the future, patients will complete these assessments when attending hospital clinic appointments and a selection of the assessments will then be carried forward and translated into a home assessment tool which will proved a useful and reproduce aid for the patient and physician.