ArticlePloS one2018
Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.
Article in PloS one, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it, 35 citations in OpenAlex.
- Information provision for people with multiple sclerosis.The Cochrane database of systematic reviews · 2018Pooled it
- Integrating big data and artificial intelligence to predict progression in multiple sclerosis: challenges and the path forward.Journal of neuroengineering and rehabilitation · 2025Review
- Do people with multiple sclerosis in Saudi Arabia want to know their prognosis? A cross-sectional nationwide study.Neurosciences (Riyadh, Saudi Arabia) · 2025Article
- Current challenges in secondary progressive multiple sclerosis: diagnosis, activity detection and treatment.Frontiers in immunology · 2025Review
- Leveraging hand-crafted radiomics on multicenter FLAIR MRI for predicting disability worsening in people with multiple sclerosis.Frontiers in neuroscience · 2025Article
- Machine-learning-based prediction of disability progression in multiple sclerosis: An observational, international, multi-center study.PLOS digital health · 2024Article
- Multiple sclerosis and computational biology (Review).Biomedical reports · 2022Review
- Motor evoked potentials for multiple sclerosis, a multiyear follow-up dataset.Scientific data · 2022Article
- How Do Patients with Life-Limiting Illness and Caregivers Want End-Of-Life Prognostic Information Delivered? A Pilot Study.Healthcare (Basel, Switzerland) · 2021Article
- Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives.Patient preference and adherence · 2021Review
- Qualitative Evaluation of a Novel Educational Tool to Communicate Individualized Hip Fracture Prognostic Information to Patients and Surrogates: My Hip Fracture (My-HF).Geriatric orthopaedic surgery & rehabilitation · 2021Article
- The IN-DEEP project "INtegrating and Deriving Evidence, Experiences, Preferences": a web information model on magnetic resonance imaging for people with multiple sclerosis.Journal of neurology · 2020Article
- The 6-star doctor? Physicians' communication of poor prognosis to patients and their families in Cape Coast, Ghana.BMJ global health · 2020Article
- Cladribine Tablets and Relapsing-Remitting Multiple Sclerosis: A Pragmatic, Narrative Review of What Physicians Need to Know.Neurology and therapy · 2020Review
- Knowledge Is Power, but Is Ignorance Bliss? Optimising Conversations About Disease Progression in Multiple Sclerosis.Neurology and therapy · 2020Article
- "I Will Respect the Autonomy of My Patient": A Scoping Review of Shared Decision Making in Multiple Sclerosis.International journal of MS careArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 1 institution in 1 country.
Funding
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.