Do people with multiple sclerosis want to know their prognosis? A UK nationwide study

PloS One
Laura DennisonIan Galea

Abstract

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. 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 lin...Continue Reading

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Oct 15, 2018·The Cochrane Database of Systematic Reviews·Sascha KöpkeAndrea Giordano
Oct 17, 2018·Multiple Sclerosis : Clinical and Laboratory Research·Christoph HeesenIan Galea
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Jan 12, 2021·International Journal of MS Care·Anne Christin RahnUNKNOWN Rehabilitation in Multiple Sclerosis (RIMS) Special Interest Group on Patient Autonomy

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