TY - JOUR
T1 - Assessing disease disclosure in adults with cystic fibrosis
T2 - The Adult Data for Understanding Lifestyle and Transitions (ADULT) survey Disclosure of disease in adults with cystic fibrosis
AU - Modi, Avani C.
AU - Quittner, Alexandra L.
AU - Boyle, Michael P.
N1 - Funding Information:
Avani Modi, PhD, has served as a consultant for Novartis Pharmaceuticals Corporation. Alexander L. Quittner, PhD, has served as a consultant for Novartis Pharmaceuticals Corporation, PTC Therapeutics, Gilead Sciences, Transave and Vertex; received a research grant from Novartis Pharmaceuticals Corporation, for 2008-2012; has been a speaker for Novartis Pharmaceuticals; is a member of the North American Advisory Group, Genentech, Inc. Michael P. Boyle, MD: has served as a consultant for Novartis Pharmaceuticals Corporation.
PY - 2010/9/10
Y1 - 2010/9/10
N2 - Background: As more patients with cystic fibrosis (CF) reach adulthood and participate in age-appropriate activities (e.g. employment, dating), disclosure of medical status becomes more important. This study assessed rates of disclosure and its perceived impact on relationships using the Adult Data for Understanding Lifestyle and Transitions (ADULT) online survey.Methods: Adults with CF participated in the survey via the United States national network of CF Centers. Descriptive and inferential statistics were utilized.Results: Participants (n = 865) were more likely to disclose to relatives (94%) and close friends (81%) than to dating partners (73%), bosses/supervisors/teachers (51%) or co-workers (39%). Respondents generally reported a neutral/positive effect on relationships following disclosure. Negative effects of disclosure were infrequent, but more likely with dating partners or bosses/supervisors/teachers. Results also indicated that disclosure may be influenced by severity of lung disease and gender, with those having normal/mild lung disease less likely to disclose their diagnosis to both co-workers (p < 0.01) and bosses/supervisors/teachers (p < 0.01), and women being more likely to disclose to close friends (p < 0.0001) and dating partners (p < 0.05) than men.Conclusions: Most adults with CF disclosed their disease to relatives and close friends. Individuals with severe CF lung disease were more likely to disclose their diagnosis to coworkers and supervisors/teachers. It may be helpful to provide support for disclosure of disease in situations such as employment and dating.
AB - Background: As more patients with cystic fibrosis (CF) reach adulthood and participate in age-appropriate activities (e.g. employment, dating), disclosure of medical status becomes more important. This study assessed rates of disclosure and its perceived impact on relationships using the Adult Data for Understanding Lifestyle and Transitions (ADULT) online survey.Methods: Adults with CF participated in the survey via the United States national network of CF Centers. Descriptive and inferential statistics were utilized.Results: Participants (n = 865) were more likely to disclose to relatives (94%) and close friends (81%) than to dating partners (73%), bosses/supervisors/teachers (51%) or co-workers (39%). Respondents generally reported a neutral/positive effect on relationships following disclosure. Negative effects of disclosure were infrequent, but more likely with dating partners or bosses/supervisors/teachers. Results also indicated that disclosure may be influenced by severity of lung disease and gender, with those having normal/mild lung disease less likely to disclose their diagnosis to both co-workers (p < 0.01) and bosses/supervisors/teachers (p < 0.01), and women being more likely to disclose to close friends (p < 0.0001) and dating partners (p < 0.05) than men.Conclusions: Most adults with CF disclosed their disease to relatives and close friends. Individuals with severe CF lung disease were more likely to disclose their diagnosis to coworkers and supervisors/teachers. It may be helpful to provide support for disclosure of disease in situations such as employment and dating.
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U2 - 10.1186/1471-2466-10-46
DO - 10.1186/1471-2466-10-46
M3 - Article
C2 - 20831811
AN - SCOPUS:77957139502
VL - 10
JO - BMC Pulmonary Medicine
JF - BMC Pulmonary Medicine
SN - 1471-2466
M1 - 46
ER -