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精神分裂症患者及其亲属的遗传咨询的重要性:潜在客户的意见和经历。

The importance of genetic counseling for individuals with schizophrenia and their relatives: potential clients' opinions and experiences.

作者信息

Lyus Vicki L

机构信息

Department of Human Genetics, Sarah Lawrence College, Bronxville, New York, USA.

出版信息

Am J Med Genet B Neuropsychiatr Genet. 2007 Dec 5;144B(8):1014-21. doi: 10.1002/ajmg.b.30536.

Abstract

Genetic counseling is a health service, which has been indicated for individuals with psychiatric conditions in their families. However, little is known about the awareness and/or experiences of genetic counseling of this group. This study was designed to assess the awareness and perceptions of genetic counseling among individuals affected by schizophrenia and their relatives. Data was collected via two online surveys. Study participants either had schizophrenia or had a relative with schizophrenia and were recruited via links from schizophrenia web sites. This study was granted IRB approval. Sixty-eight individuals with schizophrenia and 145 relatives completed the surveys. Ninety-four percent of all respondents had not been offered genetic counseling. Zero percent of affected individuals and only 5% of relatives had received genetic counseling. Forty-four percent of affected individuals and 41% of relatives indicated that their family planning decisions were influenced by the presence of schizophrenia in their family. Seventy four percent of relatives and 72% of people with schizophrenia thought genetic counseling would be useful to them. Respondents indicated that they felt genetic counseling would be useful for them and that they would like to see a genetic counselor. However, few individuals are being offered genetic counseling services. The awareness of genetic counseling needs to be raised among physicians and families affected by schizophrenia.

摘要

遗传咨询是一项医疗服务,适用于其家族中有精神疾病患者的个体。然而,对于这一群体对遗传咨询的认知和/或经历,我们知之甚少。本研究旨在评估精神分裂症患者及其亲属对遗传咨询的认知和看法。数据通过两项在线调查收集。研究参与者要么患有精神分裂症,要么有患精神分裂症的亲属,他们通过精神分裂症相关网站的链接招募而来。本研究获得了机构审查委员会(IRB)的批准。68名精神分裂症患者和145名亲属完成了调查。所有受访者中有94%未接受过遗传咨询。受影响个体中0%接受过遗传咨询,亲属中只有5%接受过遗传咨询。44%的受影响个体和41%的亲属表示,他们的计划生育决定受到家族中精神分裂症存在的影响。74%的亲属和72%的精神分裂症患者认为遗传咨询对他们会有用。受访者表示,他们觉得遗传咨询对他们会有用,并且希望见到遗传咨询师。然而,很少有人能获得遗传咨询服务。需要提高精神分裂症患者及其家属的医生对遗传咨询的认知。

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