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: 2.4). 09/2010; 10(1):46. DOI: 10.1186/1471-2466-10-46
Source: PubMed


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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Available from: Alexandra L Quittner, Oct 04, 2015
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    • "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). "
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    ABSTRACT: Hereditary hemorrhagic telangiectasia (HHT; OMIM 187300) is a disorder that affects 1:5000-1:10,000 people worldwide, with an estimated 60,000 affected individuals in the USA. Approximately 50 % of patients with HHT experience potentially life-threatening health complications such as stroke, brain abscess, or heart failure. However, the most common symptom is spontaneous and frequent nosebleeding. HHT is a hereditary condition with significant health consequences, but little is known about how individuals cope with HHT on a daily basis and how individuals share information about the disorder with social groups outside of the family. The objectives of this study were to improve understanding of the daily experiences of patients with diagnosed HHT and to investigate how they disclose their diagnosis to various social groups (friends, dating partners, employers, and coworkers) outside of their biological family. Adult patients seen at a university HHT clinic and who had been diagnosed with HHT for at least 6 months were recruited by mail. Participants completed semi-structured telephone interviews (n = 19). A qualitative content analysis of interview transcripts identified four major categories: (1) the emotional impact of HHT, (2) the social impact of HHT, (3) concerns for current and future health related to HHT, and (4) social context drives disclosure of HHT. Participants reported that although HHT was a manageable hereditary disorder, the symptoms negatively affected their daily life. It is important for health care providers to understand how individuals with rare genetic disorders are managing.
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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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