Abstract
This study is concerned with evaluating cystic fibrosis (CF) annual review practice. More precisely, we wanted to know if we are utilizing genetic counseling services and identifying poor knowledge of sexual reproductive health at annual review. We conducted short interviews with 21 CF patients at annual review regarding genetic counseling knowledge and perception. Patient responses were documented, analyzed and coded using a simple thematic analysis to précis the content. Immediately post-interview, patients were asked to complete a CF questionnaire comprised of nine questions, testing knowledge of the science of Mendelian genetics, contraceptive needs and fertility. Knowledge was then compared to responses documented at annual review. Emerging themes from interviews included: poor knowledge and a need for more information regarding what genetic counseling involves, a positive perception and experience of genetic counseling for those who had attended, and partner anxiety related to carrier testing. The percentage of patients who reported they were aware of the CF fertility and genetic issues was 95%, however, questionnaire scores ranged from 0 to 9/9 (mean 4.8 SD [2.2]). 57% of patients had received genetic counseling. These patients had a statistically significantly higher score 6.2 (1.5) versus those who had not 2.9 (1.3) p < 0.001. The All Wales Adult CF Centre annual review practice is insufficient to identify patients who may benefit from further education on reproductive health. Traditionally these domains have been granted less significance. However, as life expectancy, quality of life and reproductive assistive techniques improve, ensuring appropriate patient knowledge is of greater importance.
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Thank you to all the members of staff at the All Wales Adult Cystic Fibrosis Unit.
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Wilson, C., Duckers, J., Speight, L. et al. Assessment of Sexual Reproductive Health Knowledge Amongst Patients with Cystic Fibrosis. Sex Disabil 37, 15–23 (2019). https://doi.org/10.1007/s11195-019-09558-7
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DOI: https://doi.org/10.1007/s11195-019-09558-7