Rare diseases on the internet: An assessment of the quality of online information

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Pauer, F.; Litzkendorf, S.; Göbel, J.; Storf, H.; Zeidler, J.; von der Schulenburg, J.-M.G.: Rare diseases on the internet: An assessment of the quality of online information. In: Journal of Medical Internet Research 19 (2017), Nr. 1, No. e23. DOI: https://doi.org/10.2196/jmir.7056

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Zum Zitieren der Version im Repositorium verwenden Sie bitte diesen DOI: https://doi.org/10.15488/1945

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Summe der Downloads: 113




Kleine Vorschau
Zusammenfassung: 
Background: The importance of the Internet as a medium for publishing and sharing health and medical information has increased considerably during the last decade. Nonetheless, comprehensive knowledge and information are scarce and difficult to find, especially for rare diseases. Additionally, the quality of health or medical information about rare diseases is frequently difficult to assess for the patients and their family members. Objective: The aim of this study is to assess the quality of information on the Internet about rare diseases. Additionally, the study aims to evaluate if the quality of information on rare diseases varies between different information supplier categories. Methods: A total of 13 quality criteria for websites providing medical information about rare diseases were transferred to a self-disclosure questionnaire. Identified providers of information on the Internet about rare diseases were invited to fill out the questionnaire. The questionnaire contained questions about the information provider in general (eg, supplier category, information category, language, use of quality certificates, and target group) and about quality aspects that reflect the 13 quality criteria. Differences in subgroup analyses were performed using t tests. Results: We identified 693 websites containing information about rare diseases. A total of 123 questionnaires (17.7%) were completely filled out by the information suppliers. For the remaining identified suppliers (570/693, 82.3%), the questionnaires were filled out by the authors based on the information available on their website. In many cases, the quality of websites was proportionally low. Furthermore, subgroup analysis showed no statistically significant differences between the quality of information provided by support group/patient organization compared to medical institution (P=.19). The quality of information by individuals (patient/relative) was significantly lower compared to information provided by support group/patient organization (P=.001), medical institution (P=.009), and other associations and sponsoring bodies (P=.001) as well. Conclusions: Overall, the quality of information on the Internet about rare diseases is low. Quality certificates are rarely used and important quality criteria are often not fulfilled completely. Additionally, some information categories are underrepresented (eg, information about psychosocial counseling, social-legal advice, and family planning). Nevertheless, due to the high amount of information provided by support groups, this study shows that these are extremely valuable sources of information for patients suffering from a rare disease and their relatives.
Lizenzbestimmungen: CC BY 2.0
Publikationstyp: article
Publikationsstatus: publishedVersion
Erstveröffentlichung: 2017
Die Publikation erscheint in Sammlung(en):Wirtschaftswissenschaftliche Fakultät

Verteilung der Downloads über den gewählten Zeitraum:

Herkunft der Downloads nach Ländern:

Pos. Land Downloads
Anzahl Proz.
1 image of flag of United States United States 29 25,66%
2 image of flag of Germany Germany 25 22,12%
3 image of flag of Indonesia Indonesia 14 12,39%
4 image of flag of Netherlands Netherlands 7 6,19%
5 image of flag of No geo information available No geo information available 6 5,31%
6 image of flag of Russian Federation Russian Federation 5 4,42%
7 image of flag of Anonymous Proxy Anonymous Proxy 5 4,42%
8 image of flag of United Kingdom United Kingdom 4 3,54%
9 image of flag of Egypt Egypt 3 2,65%
10 image of flag of Australia Australia 3 2,65%
    andere 12 10,62%

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