Reproductive and sexual health in boys with cystic fibrosis: what do parents know and say?

OBJECTIVE: Improved life expectancy in cystic fibrosis (CF) alters the significance of developmentally relevant aspects such as sexual and reproductive health (SRH). Men with CF report parents are an important source of information about infertility, but parent perspectives remain unknown. The aim of this study was to systematically explore parents' knowledge, attitudes and behaviors regarding the SRH education of their sons.

PATIENTS AND METHODS: Eligible participants were parents of boys with CF aged at least 6 years who completed a 61-item written questionnaire that was developed to measure parent knowledge and education about CF-specific aspects of SRH, and parent attitudes and behaviors about the CF-specific sexuality education of their sons.

RESULTS: Eighty-four mothers (82%) and 64 fathers (70%) completed the questionnaire. All but one knew of probable infertility, being primarily informed at the time of diagnosis. Since then, 19% of parents reported subsequent discussions of SRH with their son's CF specialist, mostly initiated by parents. Adolescence was considered the most appropriate time for the initial education of boys. Sixty percent of parents worried how their sons would react. Ninety-five percent of parents said that they (alone or together with the CF specialist) should first inform their sons of probable infertility. Only 30% of parents were satisfied with their current knowledge.

CONCLUSION: These parents are well informed about male infertility in CF. However, they have had little opportunity for subsequent discussion of SRH with health professionals since their son's diagnosis. As boys mature, subsequent SRH discussions by health professionals with parents are indicated.