In 2015 we asked our participants to answer a questionnaire about prognosis on behalf of a team of researchers at the University of Southampton.
In just under three months, over 3000 Register participants answered the questionnaire and the team of researchers have just published their findings.
Prognosis is a term used to describe a prediction of the likely or expected development of a disease. There is limited research about how people with MS feel about this subject and to try to find out more, this questionnaire asked about people’s experiences with communication about their prognosis and what their attitudes and preferences were regarding their long term prognosis.
The results showed that most participants wanted to know their long-term prognosis. This varied at different stages of their MS.
Percentages of participants who wanted to know their long term prognosis, did not want to know or were unsure.
Most participants felt that long-term prognosis information would help them with decision-making, especially when thinking about the following things
Treatment options (71.2%),
and end-of-life care (78.3%).
The study reports back two other interesting findings. “Around half of participants claimed to have never discussed their long term prognosis with their neurology team and around half claimed to have ‘no idea’ about their long term prognosis” (discussion section of the paper)
One of the main findings of the study was that many people with MS really do want to have more information on their long term prognosis, they claim to think about it often and it is thought of as useful thing to know about when making decisions about treatment and other life issues. Of course there is still an important minority who did not want to know and this preference should not be overlooked.
This study is of interest because Health Care professionals may consider changing the way that they communicate patient’s long term prognosis. Prototype software tools exist to deliver estimates of prognosis of an individual person with MS, based on very large real-life data sets. There is more work to be done to look at the best ways to communicate the predictions that this tool could provide, and how these predictions could affect patient’s emotional well being and decision making.
The paper is called “Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.”