ReviewPatient preference and adherence2021
Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives.
Review in Patient preference and adherence, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 29 citations in OpenAlex.
- A systematic review to explore patients' MS knowledge and MS risk knowledge.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2024Pooled it
- Understanding the Unmet Needs of People with MS at Diagnosis and Throughout Their Care Journey: Insights from a Survey-Based Study.Neurology and therapy · 2026Article
- Role of Medicinal Plants in the Management of Multiple Sclerosis.Current pharmaceutical biotechnology · 2025Review
- The presence and burden of cognitive issues: discordance between the perception of neurologists and people living with multiple sclerosis.European journal of neurology · 2025Article
- Patient and Physician Perspectives of Treatment Burden in Multiple Sclerosis.Neurology and therapy · 2024Article
- Struggling to Keep Up and Have a Good Life: A Qualitative Study of Living With Impaired Balance Control Due to Multiple Sclerosis.Physical therapy · 2023Article
- Multiple Sclerosis-A Demyelinating Disorder and Its Dental Considerations-A Literature Review with Own Case Report.Brain sciences · 2023Review
- Intertwined like a double helix: A meta-synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis.Health expectations : an international journal of public participation in health care and health policy · 2022Review
- Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- A Novel Digital Care Management Platform to Monitor Clinical and Subclinical Disease Activity in Multiple Sclerosis.Brain sciences · 2021Article
- m6A RNA Methylation in Systemic Autoimmune Diseases-A New Target for Epigenetic-Based Therapy?Pharmaceuticals (Basel, Switzerland) · 2021Review
- Assessing illness-related uncertainty in relapsing-remitting multiple sclerosis: A psychometric analysis of the Mishel Uncertainty of Illness Scale.Multiple sclerosis journal - experimental, translational and clinicalArticle
- Onboarding of siponimod in secondary progressive multiple sclerosis patients in Australia: Novel, real-world evidence from the MSGo digital support programme.Multiple sclerosis journal - experimental, translational and clinicalArticle
- Symptom Management Among Multiple Sclerosis Care Partners in Canada.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
12 authors at 7 institutions in 6 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeMultiple sclerosis (MS) prognosis is often uncertain. This literature review considers patients' understanding of, and perspectives on, MS progression to better comprehend the unmet needs of people with MS (PwMS), in order to improve treatment adherence and quality of life (QoL).
methodsLiterature searches for peer-reviewed papers concerning patient perspectives on the progression of MS and comparable conditions, published between January 2000 and January 2020, were conducted.
resultsLittle qualitative evidence exists that examines PwMS' perspectives on MS progression. The understanding and meaning ascribed to terms such as "disease progression" vary. Some PwMS find disease labels stigmatizing, confusing, and disconnected from reality. The lack of a clear definition of progression and discrepancies between PwMS and healthcare professional (HCP) perspectives may contribute to misunderstanding and poor communication. Patient descriptions of progression and relapses include symptoms in addition to those evaluated by standard severity and disability measures. Compared with HCPs, PwMS are still focused on relapse prevention but place higher priority on QoL and ascribe different relative importance to the causes of poor adherence to treatment plans. PwMS want to discuss progression and likely prognosis. Such communication needs to be personalized and delivered with sensitivity, at an appropriate time. Poor treatment adherence may arise from a lack of understanding and poor communication, particularly around treatment goals. The few studies that directly considered patient perspectives on the progression of comparable conditions supported and extended the perspectives of PwMS. Lack of adequate communication by HCPs was the most common theme.
conclusionPatient perspectives on disease progression in MS and other chronic progressive conditions are under-investigated and under-reported. The limited evidence available highlights the importance of providing adequate information and effective HCP communication. While further studies are needed, the current evidence base offers information and insights that may help HCPs to enhance patient care, well-being, and treatment adherence.
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What OpenQuestion holds
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.