A big beast of the outcome measurement world has criticised our drive for self-assessment and self-monitoring in pwMS. Why?
They suggested that the learning effect that occurs with repeated assessments will make it difficult to judge the results of a clinical trial. I disagree. Why? Surely the randomisation process between active and placebo groups will take care of learning effects? It is clear from the spinal cord injury field that rehabilitation is essential to improve outcomes. Rats with spinal cord injury that are not given tasks to use the affected, or paralysed, limbs don't recover function. In comparison rats who are given rehabilitation have a remarkable ability to recover function. The same applies to humans with spinal cord injury and surely to pwMS. If you don't use it you lose it. Contrary to the status quo we think that getting pwMS to use their hands and limbs will improve outcomes. This is why this study below of using computer games to promote recovery of upper limb function is so important. Alison in our group is currently developing a new upper limb outcome measure for pwMS. Her idea is that the outcome measure will encourage people to improve rather than remain the same or to simply watch themselves deteriorate. In other words, the outcome measure becomes the catalyst to 'Do It and not Lose It'. Alison is currently running an online survey to help with her project. If you have the time could you please complete the survey it takes less than 3 minutes. Thank you.