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Multicenter Study
. 2010 Sep 10:10:46.
doi: 10.1186/1471-2466-10-46.

Assessing disease disclosure in adults with cystic fibrosis: the Adult Data for Understanding Lifestyle and Transitions (ADULT) survey Disclosure of disease in adults with cystic fibrosis

Avani C Modi  1 , Alexandra L Quittner, Michael P Boyle
Affiliations
Multicenter Study

Assessing disease disclosure in adults with cystic fibrosis: the Adult Data for Understanding Lifestyle and Transitions (ADULT) survey Disclosure of disease in adults with cystic fibrosis

Avani C Modi et al. BMC Pulm Med. .

Abstract

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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Figures

Figure 1
Figure 1
Degree of disclosure by relationship group.
Figure 2
Figure 2
Degree of disclosure by lung function. Pulmonary function categories reflect those defined by the CF Foundation[1]; severe = FEV1 ≤40% predicted; moderate = FEV1 41-70% predicted; mild = FEV1 71-90% predicted; normal = FEV1 > 90% predicted; FEV1 = forced expiratory volume in 1 second
Figure 3
Figure 3
Perceived effect of disclosure on relationships. Filtered for patients with identified relationships within each group for which CF was disclosed
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References

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