Educating patients about cystic fibrosis carrier screening in a primary care setting
B. A. Bernhardt, G. A. Chase, R. R. Faden, G. Geller, K. J. Hofman, E. S. Tambor and N. A. Holtzman
School of Medicine, Johns Hopkins Medical Institutions, Baltimore, MD, USA.
OBJECTIVE: To assess the effectiveness of education about cystic fibrosis
carrier screening in a primary care setting. DESIGN: Participants were
asked to read a brochure, and were offered cystic fibrosis carrier
screening. They were assessed for knowledge after reading the brochure and
again after having an opportunity to ask questions and reread the brochure
at home, at which time consent for testing was obtained. SETTING: Two sites
of a health maintenance organization in the Baltimore, Md, area.
PARTICIPANTS: Enrollees in a health maintenance organization aged 18 to 44
years. Of 608 enrollees approached, 477 completed an initial knowledge
questionnaire, and 143 consented to testing. MAIN OUTCOME MEASURE: Change
in knowledge score. RESULTS: Knowledge scores improved from a mean of 69%
correct initially to 75% at the time of consent (P < 0.1, Student's
paired t test). When participants were stratified by educational
attainment, significant improvement was observed only for participants with
no more than a high school education. However, their final knowledge score
was significantly lower than that of college graduates. CONCLUSIONS: For
people with more formal education, printed materials augmented by a chance
to ask questions may be sufficient to ensure informed consent. For less
well-educated persons, additional education may be necessary to ensure
understanding of difficult concepts.
