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

Abstract

Males with cystic fibrosis (CF) are generally infertile as a result of aberrant development of Wolffian duct derivitives. The personal significance of this and related reproductive and sexual health (RSH) issues is unknown. We set out to describe the knowledge, attitudes, and experiences regarding RSH in a group of adolescent and adult males with CF, as well as the knowledge and attitudes of parents. This descriptive study was based on a semi-structured interview utilizing in-depth interview techniques. Questions included aspects of knowledge, attitudes, and experiences. Adolescent (aged 14-17 years) and adult (at least 18 years) males attending the Children's Hospital Cystic Fibrosis Clinic, Boston, MA, USA, or hospitalized at the Children's Hospital over that period were eligible; the accompanying parent of the adolescent was also interviewed. Consecutive eligible males were interviewed over a 3 month period. Summary data are presented, attitudinal data are analyzed qualitatively, and a selection of representative transcript data are reported to describe the range of opinions. Fifty males (10 adolescents, 40 adults) participated; this constituted a consecutive sample of 44% of the eligible clinic population. Ninety percent of adults, 60% of adolescents, and 50% of parents knew of male infertility. The mean age (+/-SD) at which adults recalled first hearing this was 16.0 +/- 4.7 years and 13.9 +/- 1.6 years for those adolescents who knew of infertility. Nineteen (48%) of adults and 5 (83%) of adolescents first heard about infertility from their health care providers. Ninety percent reported no major distress upon first hearing about infertility during adolescence. Increasing significance of infertility with maturity was reported by 12 men (30%); only 4 adults (10%) reported that infertility was not a significant aspect of CF. Forty percent knew that males with CF have a small volume ejaculate, but none had been told this by a health care provider. Thirty percent of men had semen analysis performed and all were azoospermic. We conclude that the majority of males with CF know of likely infertility. The significance of this knowledge changes with time. Poor knowledge and confusion surround a range of RSH issues in males with CF.