Cystic fibrosis: what do patients know, and what else would they like to know?

Development, validation, and implementation of a questionnaire assessing disease knowledge and understanding in adult cystic fibrosis patients

“…Due to differences in design, patient selection, and questionnaire items, it is difficult to directly compare scores with other published studies; however, mean knowledge scores for other studies were generally between 60-70% [5,6,9,17]. The mediocre scores of all of these studies suggest that general education about CF is needed to improve the overall knowledge base of this population.…”

“…Because much of CF education occurs during visits that likely focus on acute symptoms and managing daily treatments, education about future planning may not occur regularly [5,9,[17][18][19]. In this regard, it is unlikely that genetics or reproduction would be discussed unless a patient specifically requested information, which many patients have reported to be an embarrassing or uncomfortable task [20,21].…”

“…Other studies have conflicting data regarding this topic, with reports of between 25-90% of men being aware of CF's effect on their fertility and between 32-65% of women being aware of CF's potential effect on their fertility [3][4][5]17,20,22,23]. Despite these variations, it is clear that a complete understanding of how CF affects fertility is lacking in most populations.…”

Reproductive health in males with cystic fibrosis: knowledge, attitudes, and experiences of patients and parents

“…This contrasts to an earlier study in 16 adolescent males that found the majority were ignorant of infertility. 3 Similarly, three-fourths of 28 Canadian males were unaware of infertility. 4 We also describe significant confusion and lack of knowledge about infertility versus impotence as well as a lack of awareness of the risk of STD.…”

“…2 The few studies to address any aspect of RSH in males suggest striking knowledge deficits. 3,4 The particular effects of CF in males render these discussions highly pertinent. The majority of males with CF have aberrant development of Wolffian duct derivatives.…”