Online Information and Health Literacy in Rare Childhood Diseases
DOI:
https://doi.org/10.62008/ixc/15/02InformKeywords:
Online Communication, Rare Diseases, Health Literacy, Web Quality, Readability, ChildhoodAbstract
The Internet is an important source of information for people with rare diseases and/or their relatives. The purpose of the study was to formulate and validate an index that might assess in a simple way the quality of websites with health information in Spanish. Validation focused the specific case of childhood rare eye diseases aiming to assess their suitability as elements that foster health literacy. Synthetic Quality Index (SQI) was formulated, with a range of 0 to 13 points, and 2 dimensions: reliability and readability. In the validation, a sample of web pages with information on childhood rare eye diseases that lead to visual impairment, selected through Google Spain, was analysed. The gold standard was the Bermúdez questionnaire. The SQI has proven to be a valid index, and very easy to use and interpret. The results suggest that the quality of websites with information regarding childhood rare eye diseases is not good, neither in terms of reliability nor readability. This can have an impact on the level of health literacy of the affected people and their families.
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