کد مقاله کد نشریه سال انتشار مقاله انگلیسی نسخه تمام متن
4209780 1280496 2007 6 صفحه PDF دانلود رایگان
عنوان انگلیسی مقاله ISI
Adults with cystic fibrosis report important and unmet needs for disease information
موضوعات مرتبط
علوم پزشکی و سلامت پزشکی و دندانپزشکی پزشکی ریوی و تنفسی
پیش نمایش صفحه اول مقاله
Adults with cystic fibrosis report important and unmet needs for disease information
چکیده انگلیسی

BackgroundThe informational needs of the growing population of adults with cystic fibrosis (CF) have not been previously assessed.MethodsAdults 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.ResultsThe median age of the 233 respondents was 34 years, median FEV1 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.ConclusionsAdults 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.

ناشر
Database: Elsevier - ScienceDirect (ساینس دایرکت)
Journal: Journal of Cystic Fibrosis - Volume 6, Issue 6, 30 November 2007, Pages 411–416
نویسندگان
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