Social Isolation Among Young Adult Patients With Cystic Fibrosis

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Cystic fibrosis (CF) is an inherited chronic disease that is unique for a number of reasons. The prescribed daily treatment regimen is often complex, including multiple airway clearance sessions and large numbers of oral and inhaled medications. In addition to this high treatment burden, patients suffer from chronic respiratory tract infections that have led to the development of strict infection-control measures in the outpatient and inpatient medical care environments. The theoretical benefit of these isolation practices is to prevent infection, spread from one CF individual to another, but these practices also frequently result in social isolation which can have profound effects on an individual’s emotional coping and adherence…show more content…
The disease can also result in various obstructions of the pancreas, hindering digestion (World Health Organization, 2012, p.5).
Newborn screening is routinely performed in the United States, Australia and numerous European countries (Zemanick, et al., 2010). If the newborn screening is positive, the patient is subsequently evaluated with a sweat test and possibly genetic testing to confirm the diagnosis of CF (Cystic Fibrosis Foundation, 2014).
The prevalence of cystic fibrosis is about one in every 3,500 births in the United States, and one in every 3,600 births in Canada (Cystic Fibrosis Foundation Patient Registry, 2012; Cystic Fibrosis Canada, 2014). These numbers are lower in comparison to one in every 2,000-3,000 births in the European Union (World Health Organization, 2012). In Canada there are roughly 4,000 individuals living with CF (Cystic Fibrosis Canada, 2014). In the United States there are approximately 30,000 individuals living with CF and 70,000 worldwide (Cystic Fibrosis Foundation Patient Registry, 2012).
Individuals diagnosed with CF have a greater life expectancy today than ever before, as a result of major advances in diagnosis and treatment (Szyndler, Towns, Asperen & McKay, 2005). Once known as a disease of childhood, individuals with CF are now living into adulthood. Between 1969 and 1990, the average age of individuals living with CF doubled, from 14 to 28 years (Elgudin, Kishan, & Howe, 2004). In 2012, the average age of adults living with

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