Evidence map›Paper›PMID 35477513›Full record

ArticleRespiratory research2022

YouTube-videos for patient education in lymphangioleiomyomatosis?

Finn M Wilkens, Claudia Ganter, Katharina Kriegsmann, Heinrike Wilkens, Nicolas Kahn, Gillian C Goobie, Christopher J Ryerson, Michael Kreuter

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In one paragraph

Article in Respiratory research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed, 1 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

15 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Evaluation of the Quality of Online Resources for Scanxiety: YouTube and Major Websites.Journal of cancer education : the official journal of the American Association for Cancer Education · 2026
    Article
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  6. The origin of YouTube videos on hereditary angioedema matters.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2025
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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.

Finn M WilkensCenter for Interstitial and Rare Lung Diseases, Dep. Pneumology, Thoraxklinik, University of Heidelberg, Heidelberg, Germany.
Claudia GanterCenter for Interstitial and Rare Lung Diseases, Dep. Pneumology, Thoraxklinik, University of Heidelberg, Heidelberg, Germany.
Katharina KriegsmannDepartment for Hematology, Oncology and Rheumatology, University of Heidelberg, Heidelberg, Germany.
Heinrike WilkensDepartment of Pneumology, Allergology and Critical Care Medicine, University Medical Centre, Saarland University, Homburg/Saar, Germany.
Nicolas KahnCenter for Interstitial and Rare Lung Diseases, Dep. Pneumology, Thoraxklinik, University of Heidelberg, Heidelberg, Germany.
Gillian C GoobieClinician Investigator Program, Department of Medicine, University of British Columbia, Vancouver, BC, Canada.
Christopher J RyersonDepartment of Medicine, University of British Columbia and St. Paul's Hospital, Vancouver, BC, Canada.
Michael KreuterCenter for Interstitial and Rare Lung Diseases, Dep. Pneumology, Thoraxklinik, University of Heidelberg, Heidelberg, Germany. kreuter@uni-heidelberg.de.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe Internet is commonly used by patients to acquire health information. To date, no studies have evaluated the quality of information available on YouTube regarding lymphangioleiomyomatosis (LAM). Our aim was to determine the quality and content of YouTube videos regarding LAM and to compare the information provided with current knowledge and guidelines about the disease.

methodsThe first 200 video hits on YouTube in English for the search term "lymphangioleiomyomatosis" were recorded. All videos suitable for patient education on LAM were included. Video quality was analyzed independently by two investigators utilizing the Health on the Net (HONcode) score, which assesses whether websites provide understandable, accessible, and trustworthy health information; the DISCERN score, which evaluates the quality of information about treatment decisions; and a newly developed LAM-related content score (LRCS) with 31 guideline elements.

resultsThe search identified 64 eligible videos. The "engagement rate" of 0.3 was low, with a median number of views of 408 (range 42-73,943), a median of 4 likes (range 0-2082), and the majority (53%) receiving a low HONcode score (≤ 2) and only 10% of videos achieving a high score (> 5). The median DISCERN score was 28 (range 15-61, maximum possible score 80), indicating poor video quality and reliability. The median LRCS was 8 (range 0-29, maximum possible score 31) and videos frequently failed to provide sources of information.

conclusionsOnline resources could contribute to the limited and often inaccurate information available to patients with LAM, with only a few YouTube videos providing high-quality patient-relevant information.

Indexed as

LymphangioleiomyomatosisSocial MediaHumansInformation DisseminationPatient Education as TopicReproducibility of ResultsVideo RecordingDISCERNHONcodeLymphangioleiomyomatosisPatient educationVideo

Identifiers

PMID35477513
PMCPMC9043877

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.