Evidence map›Paper›PMID 28893742›Full record

Trial reportBMJ open2017

Living with Crohn's disease: an exploratory cross-sectional qualitative study into decision-making and expectations in relation to autologous haematopoietic stem cell treatment (the DECIDES study).

Joanne Cooper, Iszara Blake, James O Lindsay, Christopher J Hawkey

Abstract readClinical Trial
In one paragraph

Trial report in BMJ open, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 2 pooled it
–field-weighted citation impact
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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Trial
  4. Article
  5. Article
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

4 authors.

Joanne CooperNottingham University Hospitals Institute of Nursing & Midwifery Care Excellence; National Institute for Health Research (NIHR) Nottingham Biomedical Research Centre, Derwent House, City Hospital Campus, Nottingham University Hospitals, Nottingham University Hospitals NHS Trust, University of Nottingham, Nottingham, UK.
Iszara BlakeNottingham University Hospitals Institute of Nursing & Midwifery Care Excellence; National Institute for Health Research (NIHR) Nottingham Biomedical Research Centre, Derwent House, City Hospital Campus, Nottingham University Hospitals, Nottingham University Hospitals NHS Trust, University of Nottingham, Nottingham, UK.
James O Lindsayottingham Biomedical ResearchEndoscopy Department, Barts Health NHS Trust, The Royal London Hospital, London, UK.
Christopher J HawkeyNottingham Digestive Diseases Centre and National Institute for Health Research (NIHR) Nottingham Biomedical Research Centre. Queen's Medical Centre, E Floor, Nottingham University Hospitals and University of Nottingham, Nottingham, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

BACKGROUND/

objectivesSevere Crohn's disease impacts negatively on individual quality of life, with treatment options limited once conventional therapies have been exhausted. The aim of this study was to explore factors influencing decision-making and expectations of people considering or participating in the Autologous Haematopoietic Stem Cell Treatment trial.

methodsAn international, cross-sectional qualitative study, involving semistructured face to face interviews across five sites (four UK and one Spain). 38 participants were interviewed (13 men, 25 women; age range 23-67 years; mean age 37 years). The mean age at diagnosis was 20 years. Interviews were audio recorded and transcribed verbatim and transcripts were analysed using a framework approach.

resultsFour themes emerged from the analysis: (1) 'making your mind up'-a determination to receive stem cell treatment despite potential risks; (2) communicating and understanding risks and benefits; (3) non-participation-your choice or mine? (4) recovery and reframing of personal expectations.

conclusionsDecision-making and expectations of people with severe Crohn's disease in relation to autologous haematopoietic stem cell treatment is a complex process influenced by participants' histories of battling with their condition, a frequent willingness to consider novel treatment options despite potential risks and, in some cases, a raised level of expectation about the benefits of trial participation. Discussions with patients who are considering novel treatments should take into account potential 'therapeutic misestimation', thereby enhancing shared decision-making, informed consent and the communication with those deemed non-eligible. ASTIC TRIAL EUDRACT NUMBER: 2005-003337-40: results.

Indexed as

AttitudeCrohn DiseaseDecision MakingHematopoietic Stem CellsHematopoietic Stem Cell TransplantationAdultAgedCross-Sectional StudiesFemaleHumansInformed ConsentMaleMiddle AgedMotivationQualitative ResearchQuality of Lifeautologous haematopoietic stem cell treatmentcrohn’s diseasedecision-makingqualitative research

Identifiers

PMID28893742
PMCPMC5595183

What OpenQuestion holds

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Registered trials

None linked

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.