We are working in collaboration with colleagues from Southampton University who have designed a research study asking your opinions on on-line program that estimates long-term prognosis for people with MS.
The main aim of this study is to improve the experience of people with MS when their prognosis is being discussed with health professionals. Prognosis is a term used to describe the prediction of how their condition is likely to progress. We know that people who understand their condition in more detail have greater control over their own care and are better equipped to make informed choices about their treatment.
The delivery of a prognosis is ordinarily a very personal matter, which needs to be tailored to the individual. This project is studying the potential use of a new, on-line program they have developed which can estimate an individual’s long-term outlook. They would like to know how people envisage that this program might enhance their experience of discussions around prognosis. For example, whether, when, where and how should this program be used? Is it likely to improve on existing information channels and ultimately provide benefit to the MS community? How do people with MS deal with uncertainty about their prognosis, and how would this program affect this?
In the next few weeks, you will find the questionnaire at the bottom of the list of your usual questionnaires. We will send you an email when it is live and ready to go. We will let you know what the final results of this poll are when we get the results in October 2015.
For more information, please contact Martina Brown, Senior Research Nurse, by emailing firstname.lastname@example.org or the MS Register team email@example.com