Is YouTube a reliable source for patient information in lymphangioleiomyomatosis?

Wilkens, Finn M.; Ganter, C.; Kriegsmann, Katharina; Wilkens, Heinrike; Kahn, Nicolas; Goobie, G.C.; Ryerson, Christopher J.; Kreuter, Michael

doi:10.1183/13993003.congress-2022.85

Cited by 3 publications

(2 citation statements)

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“…In general, there was greater quality content provided on scientific/governmental websites, and less content on news/media websites, which were particularly lacking details on evaluation and management. Consistent with our results, scientific websites on IPF similarly provided the most content (7) as did Youtube videos on lymphangioleiomyomatosis (LAM) (18).…”

Section: Discussionsupporting

confidence: 88%

Is the internet a sufficient source of information on sarcoidosis?

et al. 2023

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IntroductionMany patients use the internet as a source of health information. Sarcoidosis is a complex disease, and internet resources have not yet been analyzed for reliability and content on sarcoidosis.AimsOur study aimed to investigate the content and the quality of information on sarcoidosis provided by internet resources.MethodsGoogle, Yahoo, and Bing were searched for the term “sarcoidosis,” and the first 200 hits were saved in each case. Those websites that met the inclusion criteria (English language, no registration fees, and relevant to sarcoidosis) were then analyzed by two independent investigators for readability, quality (HON, JAMA, and DISCERN), and content (25 predefined key facts) of the provided information.ResultsThe websites were most commonly scientific or governmental (n = 57, 46%), and the median time since the last update was 24 months. Quality was rated with a median JAMA score of 2 (1; 4) and a median overall DISCERN score of 2.4 (1.1; 4.1), both scores represent partially sufficient information. In total, 15% of websites had a HON certificate. Website content measured by the median key fact score was 19 (ranging from 2.5 to 25) with the lowest scores for acute vs. chronic course of the disease, screening for extrapulmonary disease, and diffuse body pain. Poor results were achieved in industry websites and blogs (p = 0.047) with significant differences regarding definition (p = 0.004) and evaluation (p = 0.021).DiscussionSarcoidosis-related content of internet resources is partially sufficient; however, several important aspects are frequently not addressed, and the quality of information is moderate. Future directions should focus on providing reliable and comprehensive information on sarcoidosis; physicians from different disciplines and patients including self-support groups should collaborate on achieving this.

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Section: Discussionsupporting

confidence: 88%

Is the internet a sufficient source of information on sarcoidosis?

et al. 2023

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“…Almost all patients used the internet as a source to obtain information on the disease. However, internet-based information can be inadequate, especially for rare diseases [15], e.g., in idiopathic pulmonary fibrosis (IPF) [16]. More studies are available on cancer, but similarly, it was shown that the information needed for participating in a shared decision-making process is often unavailable on the internet [17].…”

Section: Discussionmentioning

confidence: 99%

How Informed Are German Patients with Pulmonary Sarcoidosis about Their Disease?

et al. 2023

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Background: Sarcoidosis is a multisystemic disease with a heterogenous course of disease. Comprehensive information about the complexity and treatment indications is essential for improving patient knowledge and adhering to therapy. Objectives: The aim of our study was to investigate the level and resources of information in patients with sarcoidosis and to analyze differences in patient subgroups including age and gender. Methods: We conducted a questionnaire-based online survey in Germany and three semi-structured focus group interviews. The interviews were evaluated independently by two investigators using a structured qualitative content analysis. Results: A total of 402 completed questionnaires were analyzed, 65.8% of participants were women, and the mean age was 53 years. The majority of patients felt well informed about their disease in general (59.4%), but 40.6% were inadequately informed. The most relevant information gaps related to the future perspective (70.6%) as well as fatigue and diffuse pain (63.9%). Most patients received information from their treating pulmonologist (72.1%). 94% used the internet, especially homepages of patient support groups (75.2%). Male participants more often reported being well informed about their disease and were more satisfied with the information (p = 0.001). During the interviews, patients expressed their wish for more comprehensive information and highlighted the importance of psychological co-care as well as the future perspective. Conclusions: A relevant proportion of patients with sarcoidosis are inadequately informed about their own disease, particularly with regard to factors impeding quality of life such as fatigue. Efforts are needed to improve the level and quality of information.

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Is the internet a sufficient source of information on Sarcoidosis?

Buschulte,

Höger,

Ganter

et al. 2023

Sarcoidosis and Other Granulomatous ILD/DPLD

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Discussion: Sarcoidosis-related content of internet resources is partially su cient; however, several important aspects are frequently not addressed, and the quality of information is moderate. Future directions should focus on providing reliable and comprehensive information on sarcoidosis; physicians from di erent disciplines and patients including self-support groups should collaborate on achieving this.

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Is YouTube a reliable source for patient information in lymphangioleiomyomatosis?

Cited by 3 publications

References 0 publications

Is the internet a sufficient source of information on sarcoidosis?

Is the internet a sufficient source of information on sarcoidosis?

How Informed Are German Patients with Pulmonary Sarcoidosis about Their Disease?

Is the internet a sufficient source of information on Sarcoidosis?

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