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健康专业人员关于在产前诊断出性染色体异常后向父母提供的信息报告及妊娠结局:一项试点研究。

Health professionals' reports of information given to parents following the prenatal diagnosis of sex chromosome anomalies and outcomes of pregnancies: a pilot study.

作者信息

Hall Sue, Abramsky Lenore, Marteau Theresa M

机构信息

Psychology and Genetics Research Group, Guy's, King's College and St Thomas' Hospitals' Medical and Dental School, 5th Floor, Thomas Guy House, Guy's Campus, London SE1 9RT, UK.

出版信息

Prenat Diagn. 2003 Jul;23(7):535-8. doi: 10.1002/pd.637.

DOI:10.1002/pd.637
PMID:12868077
Abstract

OBJECTIVES

To examine the association between the information health professionals report providing parents about sex chromosome anomalies (SCAs) and the outcomes of affected pregnancies.

METHODS

Telephone interviews were conducted with health professionals who disclosed the prenatal diagnosis of an SCA to parents. The statements they reported providing to parents about the condition were coded as positive, neutral or negative. Outcomes of the pregnancies were obtained from medical records.

RESULTS

Six of the 23 pregnancies were terminated. Health professionals reported giving parents of these six cases a greater amount of negative information about an SCA than did the health professionals reporting on the information given to the parents who continued with their pregnancies. Health professionals reported giving a similar amount of positive and neutral information to both groups of parents.

CONCLUSION

The results of this pilot study suggest that there is a positive association between the amount of negative information parents are given initially about a sex chromosome anomaly and the decision to terminate the affected pregnancy. This study is limited by its small sample size and reliance on health professionals' self-reports of information provided to parents. Larger, prospective studies in which consultations are tape-recorded and linked to parents' subsequent decision making and adjustment are needed.

摘要

目的

探讨医疗保健专业人员向父母报告的关于性染色体异常(SCA)的信息与受影响妊娠结局之间的关联。

方法

对向父母披露SCA产前诊断的医疗保健专业人员进行电话访谈。他们向父母报告的关于该病症的陈述被编码为积极、中性或消极。妊娠结局从医疗记录中获取。

结果

23例妊娠中有6例终止妊娠。与向继续妊娠的父母报告所提供信息的医疗保健专业人员相比,报告向这6例病例的父母提供了更多关于SCA的负面信息。医疗保健专业人员报告向两组父母提供的积极和中性信息数量相似。

结论

这项初步研究的结果表明,父母最初获得的关于性染色体异常的负面信息数量与终止受影响妊娠的决定之间存在正相关。本研究受样本量小以及依赖医疗保健专业人员对向父母提供信息的自我报告的限制。需要开展更大规模的前瞻性研究,在这些研究中对咨询过程进行录音,并将其与父母随后的决策和调整联系起来。

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