Knowledge, interests and educational needs of adults diagnosed with Cystic Fibrosis after age 18

AbstractBackground: Little is known about the knowledge, interests, or educational needs of those diagnosed with cystic fibrosis (CF) as adults or the extent to which they find available information helpful. The purpose of this inquiry was to address these gaps. Methods: A mailed survey, completed by an international sample (N=130) recruited through internet sites and CF Centers, collected quantitative and qualitative data to address five research questions. A response rate of 74.3% was achieved. Results: Most participants (67.4%) said they knew little or nothing about CF at diagnosis. Of the 71.5% who indicated they received patient education, 26.9% felt they were given ‘too little’. At diagnosis, most wanted disease-related information about CF. Over time they expressed interest in topics related to quality-of-life, such as CF research efforts, alternative medicine and employment issues. Three-fourths (75.4%) were active information seekers, but 60.2% were less than satisfied with what they found. Qualitative responses indicated participants did not ‘see themselves’ in available materials, which many described as ‘depressing’. Conclusions: Medical caregivers must be aware of and respond to the unique educational interests and needs of their adult-diagnosed patients. Additional research is recommended to better understand how patient education benefits these adults