Rare neurological conditions, such as ataxia, often cause problems with balance and coordination, which can limit physical activity. Interventions aimed at improving levels of physical activity are often recommended, for example strength training and balance training. However, when trials are done to test whether these interventions are effective, they are often small trials that fail to influence clinical practice.
One reason these trials have been unsuccessful in the past, is the selection of outcome measures. Outcomes measures are the factors that are measured in a trial, in order to see whether the intervention was effective. In order to improve outcome measures of physical activity that are used in trials, a group of researchers came together to identify a core outcome set.
They asked people living with rare neurological conditions, charity representatives and carers what they thought the outcome measures should assess. The group thought that it was important that the core outcome set measured function and well-being, and participation in activities. With this in mind, the researchers identified a core outcome set, which they argue should be assessed in trials aimed at improving physical activity of people with rare neurological conditions.
This core outcome set will bring consistency across different trials, allowing comparisons of studies. Importantly, the core outcome set was developed with input from people living with rare neurological conditions, including ataxia. This ensures that trials aimed at improving physical activity in people with rare neurological conditions will measure outcomes that are important to people living with the condition. Thank you to people with ataxia that took part in this research.
Read the full paper here.