While the challenges of disclosure of illness have been a focus of research in HIV/AIDS, epilepsy and mental health, minimal research has been conducted on disclosure in CF [4
]. Studies in other diseases have suggested that two of the strongest influences on the decision to disclose are concern about social stigma and increasing health needs driven by disease severity [5
]. Increasing survival of patients with CF and thus, greater involvement of adults with CF in age-appropriate activities have made disclosure an increasingly important topic in CF. The ADULT survey offered insight into the activity and disclosure practices of a large, representative sample of the US adult CF population.
Overall, results from the ADULT survey suggested that most adults with CF are pursuing typical age-appropriate activities, such as employment, independent living, romantic relationships and marriage [2
]. Two particularly interesting aspects of this study were the perceived effects of CF disclosure on relationships and how these vary by type of relationship, disease severity, and gender. The decision to disclose CF was shown to be influenced by these factors, which are likely linked to perceptions of the risks and benefits of disclosure [3
Specifically, patients were more likely to disclose their condition to relatives and close friends than dating partners, supervisors/employers/teachers or co-workers. Among relatives and close friends, it is likely that some level of personal intimacy has been established, making it easier to disclose one's medical condition. Relatives and close friends also provide significant levels of support for adults with CF in terms of disease management, clinic visits and hospitalization[14
]. Thus, it is essential to disclose one's condition to family members and close friends, who may be needed in emergency situations.
Disclosure to employers or potential romantic partners appear, however, be more complicated. These situations are directly related to the personal goals of the adult with CF and, therefore, the perceived risk of a negative reaction to disclosure is heightened. For example, when pursuing a romantic relationship, patients may be concerned about fertility issues[15
], whereas in the workplace, they may be concerned about their own perceived limitations in relation to healthy colleagues (e.g., needing time off for clinic visits or hospitalizations)[4
]. In both situations, patients may choose to conceal rather than disclose their condition because of the potential risks of rejection. Although disclosure of CF is not legally required for employment, there may be situations in which it is beneficial (e.g. letting employers know why you are absent from work). Therefore, we encourage CF teams to have a dialogue with their patients about disclosure and the risk/benefit ratio of disclosure in these contexts.
Severity of lung disease also influenced respondents' approach to disclosure. More patients in the moderate and severe disease groups disclosed to bosses/supervisors/teachers, compared to patients with normal and mild disease. These results are consistent with prior literature, suggesting that disclosure is more likely for those with severe disease because the condition is more difficult to conceal (e.g. more coughing or fatigue)[4
]. Thus, Troster's observation that disclosure is related to perceived risk of detection is supported by data from this large cohort of adults with CF[12
]. Specifically, patients with mild disease may consider their symptoms less obvious and their bodily appearance/function more 'normal' in comparison to those with more severe disease and, therefore, feel less need to risk disclosure of their condition and its potential consequences.
Gender differences in disclosure were also found. Specifically, females were more likely to disclose to close friends and dating partners than males. This is consistent with studies showing that females with chronic conditions are more likely to disclose their disease status than males [5
]. Women were also more likely to discuss issues related to healthcare, finances, and birth control with their partners than men. One possible reason is that disclosure in this context may elicit social support from close friends and dating partners, which is beneficial for their disease management.
Disclosure to neighbors and acquaintances was generally the lowest across types of relationships and disease severity groups. However, disclosure to at least some individuals within these groups was greater in those with more severe disease. Patients with fewer symptoms and a more 'healthy' appearance may feel that disclosure in these situations is more bothersome than helpful[4
]. Specifically, the public's general knowledge of CF is relatively low compared with other chronic illnesses and, therefore, rather than explain CF in transient relationships, it may be easier to relate milder symptoms to a chest infection or a better recognized disease, such as asthma. However, as symptoms and bodily appearance worsens, becoming potentially more noticeable in casual encounters, some patients preferred to disclose their diagnosis rather than being perceived as having a stigmatizing disease, such as HIV/AIDS.
Our finding that disclosure is associated with a perceived neutral or positive effect on most relationships supports a previous study indicating that lack of disclosure can negatively impact peer evaluations[13
]. Specifically, without an awareness of an individual's diagnosis of CF, peers may attribute symptoms or social absences to other problems, which can lead to negative attributions and appraisals. For example, being shorter and thinner than peers, or taking enzymes with food, may be misunderstood by observers who are unaware of the person's condition. Thus 'preventative disclosure' [10
], as it is termed, may have a positive influence on relationships by increasing awareness and reducing misperceptions. By definition, however, preventative disclosure requires an analysis of the potential positive and negative effects of disclosure versus continued concealment. Given that some perceived negative effects of disclosure were reported for supervisors/employers/teachers or romantic partners, it may be important for providers to discuss disclosure in these social contexts.