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Open Access Research article

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 Modi1*, Alexandra L Quittner2 and Michael P Boyle3

Author Affiliations

1 Cincinnati Children's Hospital Medical Center, Center for the Promotion of the Treatment Adherence and Self Management, 3333 Burnet Ave. MLC-7039, Cincinnati, OH, 45229, USA

2 University of Miami, Departments of Psychology & Pediatrics, 5665 Ponce de Leon Blvd Coral Gables, FL 33146, USA

3 Johns Hopkins University School of Medicine, Johns Hopkins Adult Cystic Fibrosis Program, 1830 E. Monument Street, 5th floor, Baltimore, MD 21205, USA

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BMC Pulmonary Medicine 2010, 10:46  doi:10.1186/1471-2466-10-46

Published: 10 September 2010

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.