Sorenson J R, Cheuvront B, DeVellis B, Callanan N, Silverman L, Koch G, Sharp T, Fernald G
Department of Health and Behavior and Health Education, School of Public Health, University of North Carolina at Chapel Hill, 27599, USA.
Am J Med Genet. 1997 May 16;70(2):121-9.
We contacted and offered free cystic fibrosis (CF) carrier education and testing to the first, second, and third degree relatives of individuals with CF followed at a large Southeastern US CF Clinic. Relatives were offered CF carrier education and testing either in their homes or in a genetic counseling clinic. Overall, of 514 relatives offered free CF carrier education and testing, 299 (58%) accepted. Significantly more (67%) of those offered education and testing in their homes accepted than those offered education and testing in a genetic counseling clinic (45%). Regression analyses identified several factors, including education, income, gender, perceived chance of being a carrier, and perceived chance of having a child who is a CF carrier, as predictors of acceptance of education and testing in both home and clinic sites. A smaller set of factors was identified that predicted acceptance of education and testing unique to each site. Within the limits of this study and its design, even when CF carrier testing is offered free of charge, including education and testing in the home, acceptance of education and testing, while higher than in general population samples, is not universal among at-risk relatives. Several factors which may have contributed to the observations reported in this study are discussed.
我们联系了美国东南部一家大型囊性纤维化（CF）诊所随访的CF患者的一级、二级和三级亲属，并为他们提供免费的CF携带者教育和检测。亲属们可以在自己家中或遗传咨询诊所接受CF携带者教育和检测。总体而言，在514名被提供免费CF携带者教育和检测的亲属中，299人（58%）接受了。在家中接受教育和检测的亲属接受率（67%）显著高于在遗传咨询诊所接受教育和检测的亲属（45%）。回归分析确定了几个因素，包括教育程度、收入、性别、认为自己是携带者的可能性以及认为自己会有一个CF携带者孩子的可能性，作为在家中和诊所接受教育和检测的接受情况的预测因素。还确定了一组较小的因素，这些因素预测了每个地点特有的教育和检测接受情况。在本研究及其设计的范围内，即使免费提供CF携带者检测，包括在家中进行教育和检测，教育和检测的接受率虽然高于一般人群样本，但在高危亲属中也并非普遍存在。本文讨论了可能导致本研究中报告的观察结果的几个因素。
