Mixed Messages: Presentation of Information in Cystic Fibrosis–Screening Pamphlets

Abstract

Written pamphlets are an important source of information for individuals deciding whether to undergo carrier testing for cystic fibrosis (CF). Adequate understanding of the condition and reproductive options following the diagnosis of a fetus with CF are critical to informed decision making. The information given about CF and reproductive options in 28 pamphlets about carrier testing, from commercial and noncommercial organizations in the United States and the United Kingdom, aimed at prenatal and other populations, was assessed. The amount of information provided about CF showed a range of 1-37 sentences (median 6.5), with most being relatively neutral and with a minority conveying a positive or a negative image. Positive sentences were less common in British, U.S. commercial, and prenatal pamphlets. Statements about life expectancy also varied considerably, both in the ages provided and in the degree of optimism conveyed. In addition, the pamphlets varied in the amount of information they provided about reproductive options following the diagnosis of a fetus with CF. Abortion was mentioned in just 15 pamphlets, more often in the United Kingdom than in the United States and more frequently in pamphlets from noncommercial than in those from commercial organizations. Wide variation in the descriptions of CF and the reproductive options presented raises concerns about the extent to which any one pamphlet may present balanced information. The choices about what information to include in educational materials need to be explicitly considered on the basis of the message intended to be sent.