Due to rising demand and budget cuts, different tools have had to be created in order to compensate the short amount of consultation time available for patients, while maintaining high quality care for all.
To this day, two different "tools" used by patients with multiple sclerosis (pwMS) for self-monitoring are already available;
1. The "9HPT" (9-Hole peg test) has already been discussed several times on this blog. For novices, this is a test to measure the upper limbs function and consists in placing 9 pegs in 9 corresponding holes as quickly as possible.
2. The "web EDSS” is an online tool, which aims to evaluate the EDSS score based on an online questionnaire.
3. A third tool is in its testing phase, and the results seem promising, it is the "Timed 25-Foot-Walking-Test or T-25-FW".
Description: The Timed 25-Foot Walk is a quantitative measure of lower extremity function. You will be directed to one end of a clearly marked 25-foot course and is instructed to walk 25 feet as quickly as possible, but safely. The task is immediately realised again by walking back the same distance.
The designer team working in collaboration with us has created a tool allowing to realise this test at home really easily. This is a string measuring exactly 25 foot long, rolled around a piece of cardboard. Our aim would be to make it available in the form of a package with the 9HPT.
For who?: For all patients with multiple sclerosis, who wish to participate actively in the monitoring and management of their multiple sclerosis.
Aim of this tool: to help monitor the function of the lower limbs, and especially the walking function.
-Stopwatch or SmartPhone,
-25-foot long string or tape measure (supplied by yourself)
-assistive device (if needed)
How to proceed?
1. Completely unroll the wire on the floor or premeasure a 25ft distance. This is the distance that shall have to be covered, as quickly as possible. The time taken to walk along the wire has to be timed, and this time has to be noted for record.
2. Introduce your results into "Clinicspeak", our online application. This application will keep record of your different results, and these will be plotted on a graph.
3. Repeat this test every 3 to 6 months. A trend will start to appear, which will reflect the evolution of your disease.
4. Discuss your results with your Neurologist.
Following your MS on a regular basis will help you notice if your condition is improving, worsening or stating stable. This will make it easier to help you and neurologist decide to start or change your treatment if needed.
Moreover, recording your results will enable you to be potentially included in future clinical trials, since drug trials often need proof of worsening in your functioning in order for you to be recruited into the trial.