La qualità dell'informazione sulla fibrosi cistica net siti internet italiani

▶ Background. Taking into consideration the increased attention on cystic fibrosis care during the last few years in Italy, this study was performed to evaluate content quality, characteristics, and completeness of Italian cystic fibrosis websites. ▶ Methods. Google was used and retrieved websites were evaluated for the presence of predefined descriptive criteria and disease information. Their contents were compared to available evidence. ▶ Results. Thirty sites were evaluated. Few fulfilled the criteria, such as listing authors (24 sites) and citing references (10). The amount of disease information varied, but 23 provided treatment information. Of these, 11 were evaluated for adherence to guidelines and all disease information was found to be in agreement. One site provided very thorough information and was the most complete. Four sites were found to be half as complete as others. ▶ Conclusions. Patients can find accurate cystic fibrosis knowledge online, but may need to navigate between multiple sites to obtain complete coverage of disease information. In Italy, a network of association websites exuts to support patients and their families. Website quality could be improved in terms of documentation, or transparency, of the information provided in order to permit users to select well-documented, updated information.