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

BACKGROUND: 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). METHODS: 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. RESULTS: 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%. CONCLUSIONS: 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.