Clayton E W, Hannig V L, Pfotenhauer J P, Parker R A, Campbell P W, Phillips J A
Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, TN, USA.
Am J Hum Genet. 1995 Jul;57(1):171-81.
We performed two studies using only written and video materials to educate people about cystic fibrosis (CF) and carrier screening. Participants were randomized to receive written or video materials. All received a brief questionnaire. Subjects in group I (n = 238) were (1) individuals in steady relationships and their partners, (2) > or = 18 years old, and (3) not pregnant. Those who accepted free screening and were not demonstrable carriers were sent a letter explaining their results and another questionnaire. Subjects in group II (n = 108) were parents seeking well child care in a university clinic. The main outcome measures were ability to answer questions correctly about (1) health status of CF carriers and people with CF, (2) the possibility of false-negative results, and (3) for those who had screening, the implications of their own results. Written and video materials were equally effective in conveying information. Prior to screening, subjects answered an average of 86% of questions correctly. Subjects with less formal education answered fewer questions correctly; 60% of those with less than a high school education had adequate knowledge of the health consequences of having CF or being a carrier, compared with > or = 94% of college graduates. Performance improved after screening. Where neither partner was a demonstrable carrier, 88% knew their own and their partner's test results, and 90% indicated that their risk of having a child with CF was not zero. Written and video educational materials can be used without face-to-face counseling to inform most people about carrier screening and their test results. These materials may be less effective for those with lower educational backgrounds.
我们进行了两项研究,仅使用书面材料和视频材料来对人们进行囊性纤维化(CF)及携带者筛查方面的教育。参与者被随机分为接受书面材料组或视频材料组。所有人都收到一份简短问卷。第一组(n = 238)的受试者为:(1)处于稳定关系的个体及其伴侣;(2)年龄≥18岁;(3)未怀孕。那些接受免费筛查且未被证明为携带者的人会收到一封信,解释其检测结果,并收到另一份问卷。第二组(n = 108)的受试者是在大学诊所寻求儿童健康护理的父母。主要结局指标包括正确回答以下问题的能力:(1)CF携带者和CF患者的健康状况;(2)出现假阴性结果的可能性;(3)对于进行了筛查的人,其自身检测结果的含义。书面材料和视频材料在传达信息方面同样有效。在筛查前,受试者平均能正确回答86%的问题。受教育程度较低的受试者正确回答的问题较少;高中以下学历的受试者中,60%对患有CF或成为携带者的健康后果有足够了解,而大学毕业生中这一比例≥94%。筛查后表现有所改善。当伴侣双方都未被证明为携带者时,88%的人知道自己和伴侣的检测结果,90%的人表示他们生育CF患儿的风险不为零。书面和视频教育材料可在无需面对面咨询的情况下使用,以告知大多数人关于携带者筛查及其检测结果的信息。对于教育背景较低的人,这些材料可能效果较差。