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

Abstract

BackgroundMultiple 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.Methods3175 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.Results53.1% 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.ConclusionsPeople 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.

Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis

“…HCPs can therefore play a helpful role in countering such depictions or misinformation and provide a trusted sounding board for patients [28], as despite their comparatively high reliance on online information, many patients still place greater trust in their physician [44]. However, while studies have shown that the majority of MS patients do in fact want to talk about progression, many find that this need goes unmet [14,45].…”

“…Despite the demonstrable benefits of good HCP-patient communication for PwMS, 25-50% of PwMS report never having discussed disease progression or long-term prognosis with their HCPs [14] (MS in the 21st Century data on file). The MS in the 21st Century initiative-in which these authors are involved-comprises a steering group of MS specialists and patient experts from 14 countries.…”

Prognostic information for people with MS: Impossible or inevitable?

“…In line with these findings a previous study showed that people with MS generally agree to be informed about their condition's two-year outcome estimate, though the value of such short-term prognostic information was rated to be limited. 9 The increased access to data from large registries, allowing to integrate information into algorithms matching individual demographic and clinical characteristics, with high selectivity and statistical power, makes more accurate and detailed long-term prognostic estimates feasible. Such estimates, including their confidence intervals, are urgently needed when making complex treatment decisions.…”

Cladribine Tablets and Relapsing–Remitting Multiple Sclerosis: A Pragmatic, Narrative Review of What Physicians Need to Know

“…The fear of many patients with MS of disease progression and disability can itself degrade quality of life [30,31]. Most patients wish to receive individualised information about their prognosis [32] and may be prepared to make trade-offs between the greater expected efficacy and more challenging tolerability profiles of more effective DMDs. Preferences for oral versus injectable treatment, and the burden of monitoring required, may also influence a patient's preference between different treatments [31,33].…”