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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

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.
BMC Pulmonary Medicine (Impact Factor: 2.49). 09/2010; 10:46. DOI: 10.1186/1471-2466-10-46
Source: PubMed

ABSTRACT 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.
Adults with CF participated in the survey via the United States national network of CF Centers. Descriptive and inferential statistics were utilized.
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.
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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    • "Employment in CF adults deserves much more attention 4 5 Laborde-Casterot and colleagues [1] rightly state that em- 6 ployment and vocational issues were largely neglected in CF 7 research, thus confirming a former statement that psychosocial 8 CF research is " long on psycho and short on social " [2]. How- 9 ever, as recent studies show [3] [4] [5] this bias seems to be corrected, "
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    • "It also have indicated that the median age of survival of patients with CF has risen from 27 years in 1985 to almost 36 years in 2009, leading to greater concern for the disease management of CF adults (Cystic Fibrosis Foundation Patient registry 2009: Annual data report, 2011). Coupled with an improved life expectancy, adult CF patients are more likely to seek independence from their families and pursue typical adult activities, such as attending college, entering serious relationships and pursuing careers (Modi et al., 2010). Issues related to sexual maturation, fertility, pregnancy and contraception have thus become important in the comprehensive care of CF patients (Tizzano et al., 1994). "
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    • "Disclosure in adults is related to disease severity, gender and the nature of the relationship (e.g. family, friend, colleague) (Modi et al. 2010), but little is known about why adolescents with CF choose not to disclose their diagnosis to friends. Understanding this process may provide insight into how best to promote better treatment adherence in adolescents (Shroff Pendley et al. 2002). "
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