Rowley P T, Loader S, Levenkron J C, Phelps C E
Department of Medicine, University of Rochester School of Medicine, NY 14642.
Am J Prev Med. 1993 Sep-Oct;9(5):261-6.
We are conducting a trial of population carrier screening for cystic fibrosis (CF), targeting pregnant and nonpregnant patients of prenatal care providers. We first enlisted providers by presenting a description of the trial to the obstetrical staffs of the five Rochester, New York, hospitals having delivery services. Of the 124 prenatal care providers (111 obstetricians and 13 family practitioners) with delivery privileges at the five hospitals, only 81 (65%) attended one of our presentations. Providers who attended lacked knowledge about CF screening and counseling and expressed divergent attitudes about prenatal diagnosis for carrier women having test-negative partners. Of the 79 providers completing an attitude questionnaire, 68 (86%) were willing to offer carrier screening to all their patients if educational materials, testing, and counseling were all provided without charge. After visiting participating physicians' offices to orient their staff, we reached two additional conclusions. First, in considering whether to offer CF carrier screening to their patients, prenatal care providers are less concerned about imperfect test sensitivity, false reassurance of those testing negative, or discrimination against those testing positive than about time required to answer patients' questions if they screen and about legal liability if they do not. Second, some providers are more resistant to offering screening to nonpregnant patients than to pregnant patients, not because they believe that the timing is less appropriate, but because nonpregnant patients do not routinely receive an advance mailing, have phlebotomy, or return for follow-up. Our experience raises concerns about the willingness and capability of prenatal care providers to translate advances in molecular medicine into prenatal screening services.
我们正在针对囊性纤维化（CF）开展一项人群携带者筛查试验，目标人群为产前护理机构的孕妇和非孕妇患者。我们首先向纽约罗切斯特市提供分娩服务的五家医院的产科工作人员介绍了该试验，以此招募机构。在这五家医院拥有分娩特权的124名产前护理人员（111名产科医生和13名家庭医生）中，只有81名（65%）参加了我们的一次介绍会。参加介绍会的护理人员缺乏关于CF筛查和咨询的知识，并且对于伴侣检测呈阴性的携带者女性进行产前诊断，他们表达了不同的态度。在79名完成态度问卷的护理人员中，68名（86%）表示，如果能免费提供教育材料、检测和咨询，他们愿意为所有患者提供携带者筛查。在走访了参与试验的医生办公室，对其工作人员进行培训后，我们得出了另外两个结论。第一，在考虑是否为患者提供CF携带者筛查时，产前护理人员更担心的不是检测灵敏度不完善、对检测呈阴性者的错误安慰或对检测呈阳性者的歧视，而是筛查时回答患者问题所需的时间以及不进行筛查时的法律责任。第二，一些护理人员更抗拒为非孕妇患者提供筛查，而不是为孕妇患者提供筛查，并非因为他们认为时机不合适，而是因为非孕妇患者通常不会收到预先邮寄的资料，不会接受静脉采血，也不会回来进行随访。我们的经验引发了人们对产前护理人员将分子医学进展转化为产前筛查服务的意愿和能力的担忧。
