Evidence map›Paper›PMID 24625283›Full record

SynthesisBMC medical informatics and decision making2013

Do personal stories make patient decision aids more effective? A critical review of theory and evidence.

Hilary L Bekker, Anna E Winterbottom, Phyllis Butow, Amanda J Dillard, Deb Feldman-Stewart, Floyd J Fowler, Maria L Jibaja-Weiss, Victoria A Shaffer, Robert J Volk

Registry-linked trialOpen access · goldAbstract readSystematic Review
In one paragraph

Synthesis in BMC medical informatics and decision making, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04236544 (Impact of a Multimedia Website With Patient Experiences of Multiple Sclerosis), which is not on this map. Cited by 87 papers, 8 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
87citing papers in PubMed, 8 pooled it
119.8field-weighted citation impact, top 1% of its field
1 · What the graph read from 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.

2 · The registry

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.

NCT04236544 naunknown statusnot on this mapstarted 2024, after this paper: background citation

Impact of a Multimedia Website With Patient Experiences of Multiple Sclerosis (PExMS) on Immunotherapy Decision-making: a Pilot Randomised Controlled Trial in a Mixed-methods Design

TypeinterventionalSponsorUniversitätsklinikum Hamburg-EppendorfRan2024 to 2025Enrolled55ConditionsMultiple Sclerosis, Multiple Sclerosis, Relapsing-Remitting, Patient Engagement, Self EfficacyArmsPExMS and DECIMS-Wiki, DECIMS-Wiki
3 · Its place in the literature

Who cites it

87 citing papers in PubMed, 8 syntheses or guidelines pooled it, 193 citations in OpenAlex.

  1. Pooled it
  2. Kidney disease pathways, options and decisions: an environmental scan of international patient decision aids.Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association · 2020
    Pooled it
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  5. Use of Decision Aids with Minority Patients: a Systematic Review.Journal of general internal medicine · 2016
    Pooled it
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  7. Information and decision-making needs among people with mental disorders: a systematic review of the literature.Health expectations : an international journal of public participation in health care and health policy · 2015
    Pooled it
  8. How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting.Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association · 2015
    Pooled it
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  11. Using Narratives to Correct Forecasting Errors in Pediatric Tracheostomy Decision Making.Medical decision making : an international journal of the Society for Medical Decision Making · 2021
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27 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 8 institutions in 4 countries.

Hilary L Bekker
Anna E Winterbottom
Phyllis Butow
Amanda J Dillard
Deb Feldman-Stewart
Floyd J Fowler
Maria L Jibaja-Weiss
Victoria A Shaffer
Robert J Volk
University of Leeds · GBBaylor College of Medicine · USGrand Valley State University · USHealth Decisions (United States) · USQueen's University · CAThe University of Texas MD Anderson Cancer Center · USUniversity of Missouri · USUniversity of Sydney · AU

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPatient decision aids support people to make informed decisions between healthcare options. Personal stories provide illustrative examples of others' experiences and are seen as a useful way to communicate information about health and illness. Evidence indicates that providing information within personal stories affects the judgments and values people have, and the choices they make, differentially from facts presented in non-narrative prose. It is unclear if including narrative communications within patient decision aids enhances their effectiveness to support people to make informed decisions.

methodsA survey of primary empirical research employing a systematic review method investigated the effect of patient decision aids with or without a personal story on people's healthcare judgements and decisions. Searches were carried out between 2005-2012 of electronic databases (Medline, PsycINFO), and reference lists of identified articles, review articles, and key authors. A narrative analysis described and synthesised findings.

resultsOf 734 citations identified, 11 were included describing 13 studies. All studies found participants' judgments and/or decisions differed depending on whether or not their decision aid included a patient story. Knowledge was equally facilitated when the decision aids with and without stories had similar information content. Story-enhanced aids may help people recall information over time and/or their motivation to engage with health information. Personal stories affected both "system 1" (e.g., less counterfactual reasoning, more emotional reactions and perceptions) and "system 2" (e.g., more perceived deliberative decision making, more stable evaluations over time) decision-making strategies. Findings exploring associations with narrative communications, decision quality measures, and different levels of literacy and numeracy were mixed. The pattern of findings was similar for both experimental and real-world studies.

conclusionsThere is insufficient evidence that adding personal stories to decision aids increases their effectiveness to support people's informed decision making. More rigorous research is required to elicit evidence about the type of personal story that a) encourages people to make more reasoned decisions, b) discourages people from making choices based on another's values, and c) motivates people equally to engage with healthcare resources.

Indexed as

Consumer Health InformationDecision Support TechniquesHealth Services ResearchPatient ParticipationCommunicationDecision MakingHumansNarration

Identifiers

PMID24625283
PMCPMC4044102
OpenAlexW2113990925

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

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.