Background
Cystic fibrosis (CF) is the most common life-threatening autosomal recessive genetic disease in the United States. Cystic fibrosis-related diabetes (CFRD) is the most common comorbidity of CF, and as patients age, the likelihood of developing diabetes increases. CFRD leads to decreased lung function, poor nutritional status, and decreased survival rates. Symptoms can be subtle and may be overlooked. The extent to which individuals with CF know about CFRD is unknown.
Aims
Assess knowledge of CFRD in adults with CF. Describe where information related to their disease is obtained. Examine relationships between measures.
Methods
A cross-sectional descriptive study was used. Adults (>18 yrs) with CF were recruited during an outpatient CF visit and asked to complete a 15-item CFRD Knowledge Survey. The survey included 10 items on knowledge of CFRD, 2 items on obtaining information about CF, and 3 items on experience with diabetes.
Results
Twenty-six individuals with CF participated, 70% were male, mean (SD) age was 27.73 (10.23). Regarding knowledge, 92% had heard of CFRD, 65% knew symptoms of CFRD, and 58% knew how the diagnosis was made. A majority (65%) reported they seek information related to CF only when necessary. The three most common sources for obtaining information were internet, physician, and clinic. The total knowledge score was significantly correlated with the experience score (r = 0.50, p = 0.009), and understanding the importance of knowing that you have CFRD (r = 0.80, p < 0.001). The experience score was also significantly correlated with understanding importance of knowing if you have CFRD (r = 0.60, p = 0.001). Understanding the importance of knowing if you have CFRD was also significantly correlated with being diagnosed (r = 0.43, p = 0.028).
Conclusions/Clinical Implications
As the number of patients diagnosed with CFRD continues to increase, both pediatric and adult endocrine nurses need to be educated and equipped to successfully manage this patient population.
Article info
Identification
Copyright
© 2012 Published by Elsevier Inc.
