ArticleHealth science reports2018
Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis.
Article in Health science reports, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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
6 citing papers in PubMed, 9 citations in OpenAlex.
- A multiple sclerosis lifestyle behavior online course: Qualitative analysis of participants' motivations, expectations and experiences.Frontiers in public health · 2022Trial
- Citizen involvement in research on technological innovations for health, care or well-being: a scoping review.Health research policy and systems · 2024Article
- Systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions: A scoping review.The journal of spinal cord medicine · 2023Article
- A Tripartite Knowledge Translation Program: Innovative Patient-Centered Approach to Clinical Research Participation for Individuals with Multiple Sclerosis.Multiple sclerosis international · 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
- Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis.Health science reports · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors at 7 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
aimsIn earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS.
methodsA 2-phase mixed-methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper-based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch.
resultsEighty-three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably, as a useful, understandable, and trustworthy information source.
conclusionWe describe a partnership approach to developing online evidence-based treatment information, underpinned by an in-depth understanding of consumers' information needs.
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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.