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

Abstract

BackgroundAs 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.MethodsAdults with CF participated in the survey via the United States national network of CF Centers. Descriptive and inferential statistics were utilized.ResultsParticipants (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.ConclusionsMost 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.

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

“…In chronic illness, the body's physical appearance can discredit an individual, while a Bhealthy^appearance can allow an individual with chronic illness to conceal their condition (Christian and D'Auria 1997;Joachim and Acorn 2000;Lowton 2004;Admi 1995). Individuals with cystic fibrosis (CF) reported hiding their condition during childhood in order to fit in socially (Christian and D'Auria 1997), while adults with severe signs and symptoms of CF were more likely to share their diagnosis than mildly affected adults who appeared Bhealthy^ (Lowton 2004;Modi et al 2010). The influence of physical appearance associated with illness has also been observed with conditions such as epilepsy and AIDS (Scambler and Hopkins 1986;Mansergh et al 1995).…”

“…Research on how individuals self-disclose with regard to a hereditary disorder has been examined in several conditions including CF, hereditary breast and ovarian cancer (HBOC), Huntington disease (HD), and alpha 1 antitrypsin deficiency (AAT) (Lowton 2004;Modi et al 2010;Klitzman and Sweeney 2011;Klitzman 2012;Hoskins et al 2008;Keenan et al 2013). A unique set of medical concerns, natural history, and treatment and management options for each hereditary condition may impact how individuals experience their condition on a daily basis, and this may alter an individual's motivation and need to share their diagnosis outside of family.…”

“…Regarding social relationships, the duration and quality of the relationship determined whom individuals told their condition about. Overall, most participants shared their diagnosis with those they considered emotionally close, such as close friends (Scambler and Hopkins 1986;Modi et al 2010;Lowton 2004;Klitzman and Sweeney 2011;Klitzman 2012).…”

Spontaneous disclosure of BRCA1/2 genetic test results to employers: a French prospective study

“…Genetic discrimination has been investigated and described in the context of Huntington's disease or other genetic diseases, and the types of discrimination unaffected carriers are liable to undergo in their lifetime, especially in the framework of insurance and at the workplace. [9][10][11][12] Transmission of medical information to employers has been reported to occur in 51% of patients with cystic fibrosis 13 and even in 76% of those with arthritis, 14 and further knowledge is required about the issues involved in to self-disclosure of conditions of this kind. The existence of a supportive occupational environment and supportive co-workers seems to be a key issue for these patients.…”

Cystic Fibrosis and Infertility

“…According 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).…”