title: Adults with cystic fibrosis report important and unmet needs for disease information.
abstract: BACKGROUND
  The informational needs of the growing population of adults with cystic fibrosis (CF) have not been previously assessed.
  
  
  METHODS
  Adults with CF enrolled in the Project on Adult Care in CF (PAC-CF) completed a survey including 22 items in which information topics were rated on the importance of receiving more information and the satisfaction with sources of information. Unmet needs were defined as those topics rated with both high importance and low satisfaction with information sources.
  
  
  RESULTS
  The median age of the 233 respondents was 34 years, median FEV(1) was 68% predicted, and 59% were female. The information topics with the highest mean importance ratings were on CF treatments and managing infection. The percentage of respondents rating an individual information need as unmet ranged from 2-32%. Information on "ways to deal with decreased energy, "new CF therapies," and "ways to deal with the unpredictability of the future" were reported as unmet by almost one-third of respondents. For all but four of the information topics assessed, clinical and socio-demographic factors were not significantly associated with increased likelihood of reporting unmet informational needs.
  
  
  CONCLUSIONS
  Adults with CF rated information on treatment topics as most important. In contrast, patients were more likely to report information needs on disease self-management and future planning as unmet. Clinical and socio-demographic patient characteristics were not systematically associated with unmet informational needs. Clinicians caring for adult CF patients should not solely rely socio-demographic factors or markers of disease severity as signals for providing comprehensive information on disease self-management and future planning.
authors: Children's Hospital Boston, Division of Respiratory Diseases, Harvard Medical School, 300 Longwood Avenue, Boston, MA, 02115, USA. gregory.sawicki@childrens.harvard.edu
authors: Gregory S
authors: GS
authors: Sawicki
authors: Deborah E
authors: DE
authors: Sellers
authors: Kimberly
authors: K
authors: McGuffie
authors: Walter
authors: W
authors: Robinson
mesh_terms: D000328:Adult; D003550:Cystic Fibrosis / Q000628:therapy*; D005260:Female; D006801:Humans; D033181:Information Dissemination; D008297:Male; D020380:Needs Assessment; D010353:Patient Education as Topic; D011795:Surveys and Questionnaires