Evidence map›Paper›PMID 36302557›Full record

ArticleBMJ open gastroenterology2022

Identifying and understanding disease burden in patients with inflammatory bowel disease.

Katrine Risager Christensen, Mark Andrew Ainsworth, Marie Skougaard, Casper Steenholdt, Sine Buhl, Jørn Brynskov, Lars Erik Kristensen, Tanja Schjødt Jørgensen

Abstract read
In one paragraph

Article in BMJ open gastroenterology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
–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

8 citing papers in PubMed.

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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

8 authors.

Katrine Risager ChristensenGastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark katrine.risager.christensen@regionh.dk.ORCID 0000-0002-3854-9467
Mark Andrew AinsworthGastroenterology, Odense University Hospital, Odense, Denmark.
Marie SkougaardThe Parker Institute, Copenhagen University Hospital Bispebjerg and Frederiksberg, Copenhagen, Denmark.
Casper SteenholdtGastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark.ORCID 0000-0003-3898-4212
Sine BuhlGastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark.
Jørn BrynskovGastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark.
Lars Erik KristensenThe Parker Institute, Copenhagen University Hospital Bispebjerg and Frederiksberg, Copenhagen, Denmark.
Tanja Schjødt JørgensenThe Parker Institute, Copenhagen University Hospital Bispebjerg and Frederiksberg, Copenhagen, Denmark.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivePhysicians tend to focus on biomedical targets while little is known about issues important to patients. We aimed to identify critical concepts impacting patients with inflammatory bowel disease (IBD).

designWe performed a survey of patients with IBD in biologic therapy (n=172) and used a validated qualitative method called group concept mapping (GCM) in patient workshops. The survey included 13 questions on attitudes toward symptoms and issues related to IBD. In the eight workshops, patients (n=26) generated statements later clustered into concepts identifying issues impacting a patient's life. Patients ranked the statements.

resultsIn the survey, patients' mean age were 40 years (SD 13), 53% were women, and 38% had ulcerative colitis. They identified fatigue (57%) and stool frequency (46%) as the most critical symptoms impacting their daily lives regardless of disease activity. In the GCM workshops with Crohn's disease (n=13) (median age 42 years (IQR 39-51) and 62% were women), 335 statements divided among 10 concepts were generated, and the three most important concepts were 'Positive attitudes', 'Accept and recognition', and 'Sharing knowledge and experiences in life with Crohn's disease'. In the workshops with ulcerative colitis (n=13) (median age 43 years (IQR 36-49) and 69% were women), 408 statements divided into 11 concepts were generated; the most important concepts were 'Take responsibility and control over your life', 'Medication', and 'Everyday life with ulcerative colitis'.

conclusionFocusing solely on IBD symptoms, patients identified fatigue and stool frequency to impact daily life the most. However, when investigating the disease burden in a broader perspective beyond classic IBD symptoms, patients identified concepts with focus on emotional health to be most important.

trial registrationThe Copenhagen University Hospital, Herlev and Gentofte approved the questionnaire and methodology (work-zone no: 18015429).

Indexed as

Colitis, UlcerativeCrohn DiseaseInflammatory Bowel DiseasesAdultCost of IllnessFatigueFemaleHumansMalecrohn's diseaseinflammatory bowel diseaseulcerative colitis

Identifiers

PMID36302557
PMCPMC9621179

What OpenQuestion holds

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LicenceCC BY-NC
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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.