If you live in the UK, If you haven't done this yet, why not sign up to the UK MS register.
Dennison L, Brown M, Kirby S, Galea I. Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.
PLoS One. 2018;13(2):e0193407.BACKGROUND:
Multiple sclerosis (MS) has a varied and uncertain trajectory. The recent development of analytical processing tools that draw on large longitudinal patient databases facilitates personalised long-term prognosis estimates. This has the potential to improve both shared treatment decision-making and psychological adjustment. However, there is limited research on how people with MS feel about prognosis communication and forecasting. This study investigated the prognosis communication experiences and preferences of people with MS and explored whether clinical, demographic and psychological factors are associated with prognosis information preferences.
METHODS:3175 UK MS Register members (59% of those with active accounts) completed an online survey containing 17 questions about prognosis communication experiences, attitudes and preferences. Participants also completed validated questionnaires measuring coping strategies, tendencies to seek out ('monitor') or avoid ('blunt') information in threatening situations, and MS risk perceptions and reported their clinical and sociodemographic characteristics. Data already held on the MS Register about participants' quality of life, anxiety and depression symptoms and MS impact were obtained and linked to the survey data.
RESULTS: 53.1% of participants had never discussed long-term prognosis with healthcare professionals. 54.2% lacked clarity about their long-term prognosis. 76% had strong preferences for receiving long-term prognosis information. 92.8% were interested in using tools that generate personalised predictions. Most participants considered prognostication useful for decision-making. Participants were more receptive to receiving prognosis information at later time-points, versus at diagnosis. A comprehensive set of sociodemographic, clinical and psychological variables predicted only 7.9% variance in prognosis information preferences.
CONCLUSIONS: People with MS have an appetite for individualised long-term prognosis forecasting and their need for information is frequently unmet. Clinical studies deploying and evaluating interventions to support prognostication in MS are now needed. This study indicates suitable contexts and patient preferences for initial trials of long-term prognosis tools in clinical settings.
We all want to see where the future goes, but can we predict it accurately?. This study from the UK MS Register where a survey was done and as you can see you would like tools to predict the fututre. If we read the papers, I would say we already have them and one example is called an MRI machine.
However, this shows the problem with prediction tools because there are hundreds and hundreds of papers saying that if you have this or that imaging characteristic then this will happen in the future. However the problem comes when an individual asks what does this mean for me and the answer is:, "I don't really know". This is because the predictions are not that accurate. There will be people who do well and those that don't. There are always exceptions to the rule.