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.

Does googling for preconception care result in information consistent with international guidelines: a comparison of information found by Italian women of childbearing age and health professionals

“…Several authors investigated quality of information found on the Internet regarding specific health topics, including cystic fibrosis [40], pediatric cancer [41], rheumatologic diseases [42], Mediterranean diet [43]. The search keywords used in these studies were chosen by the authors themselves, either simulating a search by a random user, or simulating a patient’s experience [44].…”

Surfing for mouth guards: assessing quality of online information

“…(1,9,10,20,32,34,35) 23 (5,6,7,8,12,13,14,15,16,17,18,19,21,22,23,24,25,26,29,30,36,37,39) The amount of information available on the Internet is increasing, and thus, concern has been expressed about the quality of this information. Despite this concern, only a handful of studies have recently assessed the quality of health-related information on different topics, such as epilepsy (34), anaesthesia (19,35), breast cancer (23,36), menopause (37), asthma (38), osteoporosis (33), chronic pain (19), scoliosis (39), urology (14,22), anxiety disorders (18) and cystic fibrosis (21). Among these studies, only one was found in the area of dental health describing dental patients' use of the Internet, but this study did not assess the quality of the dental health information (12).…”

“…Some articles assess reliability based on the criteria identified by Eysenbach et al (17) in their systematic review of assessing the quality of health information for consumers on the World Wide Web (WWW) (18)(19)(20)(21). Other studies have employed an organization's generic tools or established principles.…”

“…Established principles that have been employed are HON principles and the European Commission Quality Criteria for health-related websites (23,24). Other researchers have developed their own scoring systems to evaluate the contents on the websites (14,(19)(20)(21)23). Consensus, however, has not yet been achieved.…”

Improving Health Literacy. The New American Thoracic Society Guidelines for Patient Education Materials

“…Despite this widespread recognition of the importance of health literacy, the quality of educational materials available for patients and families is variable (22,23). Regarding respiratory illnesses, reviews of online patient education materials regarding smoking cessation, asthma, idiopathic pulmonary fibrosis, and cystic fibrosis have found the quality of the materials was often low and sometimes misleading (24)(25)(26)(27)(28)(29). A similar review of chronic obstructive pulmonary disease materials on YouTube showed substantial variation in quality as well (30).…”