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:
The research reported in this manuscript was supported by Novartis Pharmaceuticals Corporation. The investigators retained full independence in the conduct of this research. The authors would like to thank Andrew Owen, MSc, Medicus International, for his editorial assistance. Editorial support was funded by Novartis Pharmaceuticals Corporation. The opinions expressed in the current article are those of the authors. The authors received no honoraria or other form of financial support related to the development of this manuscript. The final decision to submit the manuscript for publication was taken by the authors.
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
SN - 1471-2466
VL - 10
JO - BMC pulmonary medicine
JF - BMC pulmonary medicine
M1 - 46
ER -