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唐氏综合征血清筛查:部分女性的经历。

Serum screening for Down's syndrome: some women's experiences.

作者信息

Statham H, Green J

机构信息

Centre for Family Research, University of Cambridge.

出版信息

BMJ. 1993 Jul 17;307(6897):174-6. doi: 10.1136/bmj.307.6897.174.

Abstract

OBJECTIVES

To describe the experiences of a small group of women who had positive results after serum screening for Down's syndrome.

DESIGN

Semistructured telephone interviews and correspondence with women after a positive screening result (four women) negative amniocentesis results (eight), or termination of a pregnancy with a confirmed abnormality (eight).

SUBJECTS

20 women who contacted Support After Termination For Abnormality about their experiences of serum screening for Down's syndrome.

MAIN OUTCOME MEASURES

Women's knowledge and understanding of the test; staff misconceptions; communication of results; how women coped with the diagnostic process; attitudes to the test and to termination of abnormal fetuses.

RESULTS

All women were made anxious by their positive screening test, no matter how they were told. The women's experiences suggested that medical staff were unclear about the implications of screening tests and how to interpret risk. Even after receipt of negative amniocentesis results some women remained anxious. Staff did not always recognise women's concerns while awaiting amniocentesis results.

CONCLUSIONS

The way in which serum screening is being implemented does not always meet the needs of women with positive results. Some of the problems were not specific to screening for Down's syndrome. When screening tests are introduced policies should be adopted to ensure appropriate support for participants.

摘要

目的

描述一小群唐氏综合征血清筛查结果呈阳性的女性的经历。

设计

对筛查结果呈阳性(4名女性)、羊水穿刺结果为阴性(8名)或终止确诊异常妊娠(8名)的女性进行半结构化电话访谈及通信。

研究对象

20名就唐氏综合征血清筛查经历与终止异常妊娠后支持组织联系的女性。

主要观察指标

女性对检测的知识和理解;工作人员的误解;结果的传达;女性应对诊断过程的方式;对检测及终止异常胎儿的态度。

结果

无论以何种方式告知,所有筛查结果呈阳性的女性均感到焦虑。女性的经历表明,医护人员不清楚筛查检测的意义以及如何解读风险。即使在收到羊水穿刺阴性结果后,一些女性仍感到焦虑。在等待羊水穿刺结果期间,工作人员并不总是能认识到女性的担忧。

结论

血清筛查的实施方式并不总能满足筛查结果呈阳性女性的需求。其中一些问题并非唐氏综合征筛查所特有。引入筛查检测时应采用相应政策,以确保为参与者提供适当支持。

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Use of the disutility ratio in prenatal screening for Down's syndrome.效用比在唐氏综合征产前筛查中的应用。
Br J Obstet Gynaecol. 1999 Feb;106(2):108-15. doi: 10.1111/j.1471-0528.1999.tb08209.x.

引用本文的文献

本文引用的文献

1
Screening, ethics, and the law.筛查、伦理与法律。
BMJ. 1993 Jan 16;306(6871):209. doi: 10.1136/bmj.306.6871.209-a.
3
Screening for Down's syndrome.唐氏综合征筛查
BMJ. 1988 Dec 3;297(6661):1469. doi: 10.1136/bmj.297.6661.1469-b.
7
Screening, ethics and the law.筛查、伦理与法律。
BMJ. 1992 Dec 5;305(6866):1433-4. doi: 10.1136/bmj.305.6866.1433-e.
8
Antenatal screening for Down's syndrome.唐氏综合征的产前筛查
BMJ. 1992 Sep 26;305(6856):769; author reply 771. doi: 10.1136/bmj.305.6856.769.
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