Development and evaluation of an educational website for adults with cystic fibrosis

The high prevalence of internet use among adults with cystic fibrosis (CF) provides an opportunity for healthcare professionals to use the internet as a tool for patient education. The Toronto Adult Cystic Fibrosis website was developed, implemented, and evaluated (www.torontoadultcf.com).

The website structure and content were developed following a needs assessment questionnaire. The website was evaluated with a satisfaction survey and through examination of compliance to American Medical Association (AMA)'s guidelines for health information sites.

Users showed a high prevalence of internet usage (98.7%), described a need for more information about CF and provided content suggestions. A satisfaction survey revealed that CF patients compose the highest proportion of site users (57.5%), and users perceive the site as useful, with a mean score of 4.3 on a five-point satisfaction scale. Key areas for improvement have been identified. Website compliance with AMA guidelines was excellent at 80%.

The Toronto Adult CF website provides needed information for our patients. Future directions include ongoing improvement of the website as a patient resource and assessment of the ability of the website to improve patient knowledge and outcomes.