Attitudes towards reproductive issues and carrier testing among adult patients and parents of children with cystic fibrosis (CF)

Assessing the reproductive choices of parents of children with cystic fibro sis (CF) is important in getting a greater insight into the possible needs for counselling of carrier couples in the reproductive decision-making proc ess. Also. parents' reproductive attitudes might indicate critical issues f or discussion with regard to introducing general population screening progr ammes. Data were available from two groups of subjects: 287 adult patients with CF (mean age 27.5 years) and 288 parents of a child with CF (mean age of child 7.7 years) who participated in a Dutch national survey. Attitudes towards reproductive issues and carrier screening and parents' reproductive behaviour were analysed in terms of responses to questionnaires. To avoid having another child with CF, most parents decided against further pregnanc ies or used other reproductive options. Prenatal diagnosis was used by 72% of parents, whereas 76% of parents planning more children intended using th is option. Intention to use prenatal diagnosis was associated with the stre ngth of religious conviction. and was not associated with perceived severit y of CF, health of the child, or future therapeutic possibilities. Responde nts demonstrated difficulties in deciding to abort for CF. A majority of pa rents and adult patients supported carrier couple identification within CF families. The results suggest that those most closely involved with CF will accept the reproductive choices of carrier couples identified in populatio n screening programmes. Copyright & 2001 John Wiley, Ltd.