TY  - JOUR
A1  - Pauer, Frédéric
A1  - Litzkendorf, Svenja
A1  - Göbel, Jens
A1  - Storf, Holger
A1  - Zeidler, Jan
A1  - Schulenburg, Johann-Matthias von der
T1  - Rare diseases on the internet : an assessment of the quality of online information
T2  - Journal of medical internet research
N2  - 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.
KW  - health literacy
KW  - rare disesases
KW  - quality indicators
KW  - health information exchange
Y1  - 2017
UR  - http://publikationen.ub.uni-frankfurt.de/frontdoor/index/index/docId/43964
UR  - https://nbn-resolving.org/urn:nbn:de:hebis:30:3-439645
SN  - 1438-8871
SN  - 1439-4456
N1  - ©Frédéric Pauer, Svenja Litzkendorf, Jens Göbel, Holger Storf, Jan Zeidler, Johann-Matthias Graf von der Schulenburg. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 18.01.2017. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
VL  - 19
IS  - 1, e23
SP  - 1
EP  - 11
PB  - Healthcare World
CY  - Richmond, Va.
ER  -