title: 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.
authors.affiliation: Laboratory for Mother and Child Health, Department of Public Health, Mario Negri Pharmacological Research Institute, Milan, Italy. pandolfini@marionegri.it
authors.forename: Chiara
authors.initials: C
authors.lastname: Pandolfini
authors.forename: Antonio
authors.initials: A
authors.lastname: Clavenna
authors.forename: Maurizio
authors.initials: M
authors.lastname: Bonati
mesh_terms: D054626:Consumer Health Information / Q000379:methods*; D003550:Cystic Fibrosis; D006801:Humans; D020407:Internet; D007558:Italy