Quality of cystic fibrosis information on Italian Websites

Abstract

Given 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. GOOGLE was used and retrieved websites were evaluated for the presence of predefined descriptive criteria and disease information. Their contents were compared with available evidence. 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 comparable sites were evaluated for adherence to guidelines and overall completeness. All information adhered to guidelines. One site provided very thorough information and was the most complete, whereas four were found to be half as complete as others. Patients can find accurate cystic fibrosis knowledge online, but may need to navigate between multiple sites to obtain comprehensive coverage of disease information. In Italy, a network of association websites exists to support patients and families. Website quality could be improved in terms of documentation (transparency) of the information provided in order to permit users to select well-documented, updated information.

Keywords:

• Cystic fibrosis
• health education
• Internet
• Italy
• public health informatics

Acknowledgements

Chiara Pandolfini's work was funded in part by a Monzino Fellowship. Antonio Clavenna holds a fellowship granted by Boehringer Ingelheim Italia. The authors thank Marina Bianchi, Lorena Labate, Silvia Maschi, and Alessandra Rossignoli for their assistance in defining and pre-testing the website evaluation form, Rita Campi for acting as second reviewer of the websites, Lorena Labate for the concordance analyses, and Gianni Mastella and Graziella Borgo for their precious and qualified comments.