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不同国籍人群中林奇综合征自我概念量表的验证

Validation of a self-concept scale for Lynch syndrome in different nationalities.

作者信息

Petersen Helle Vendel, Domanska Katarina, Bendahl Pär-Ola, Wong Jiahui, Carlsson Christina, Bernstein Inge, Esplen Mary Jane, Nilbert Mef

机构信息

Clinical Research Centre, Hvidovre University Hospital, Copenhagen University, Hvidovre, Denmark.

出版信息

J Genet Couns. 2011 Jun;20(3):308-13. doi: 10.1007/s10897-011-9349-x. Epub 2011 Jan 26.

DOI:10.1007/s10897-011-9349-x
PMID:21267775
Abstract

Learning about hereditary cancer may influence an individual's self-concept, which otherwise represents a complex but stable cognitive structure. Recently, a 20-statement self-concept scale, with subscales related to stigma-vulnerability and bowel symptom-related anxiety, was developed for Lynch syndrome. We compared the performance of this scale in 591 mutation carriers from Denmark, Sweden and Canada. Principal component analysis identified two sets of linked statements-the first related to feeling different, isolated and labeled, and the second to concern and worry about bowel changes. The scale performed consistently in the three countries. Minor differences were identified, with guilt about passing on a defective gene and feelings of losing one's privacy being more pronounced among Canadians, whereas Danes more often expressed worries about cancer. Validation of the Lynch syndrome self-concept scale supports its basic structure, identifies dependence between the statements in the subscales and demonstrates its applicability in different Western populations.

摘要

了解遗传性癌症可能会影响个体的自我概念,否则自我概念代表着一种复杂但稳定的认知结构。最近,针对林奇综合征开发了一种包含20条陈述的自我概念量表,其中分量表与耻辱感易感性和肠道症状相关焦虑有关。我们比较了该量表在来自丹麦、瑞典和加拿大的591名突变携带者中的表现。主成分分析确定了两组相关陈述——第一组与感觉与众不同、孤立和被贴上标签有关,第二组与对肠道变化的担忧有关。该量表在这三个国家的表现一致。发现了一些细微差异,加拿大人对传递缺陷基因的内疚感和失去隐私的感受更为明显,而丹麦人则更常表达对癌症的担忧。林奇综合征自我概念量表的验证支持了其基本结构,确定了分量表中陈述之间的相关性,并证明了其在不同西方人群中的适用性。

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Balancing life with an increased risk of cancer: lived experiences in healthy individuals with Lynch syndrome.平衡生活与患癌风险增加:林奇综合征健康个体的生活经历
J Genet Couns. 2014 Oct;23(5):778-84. doi: 10.1007/s10897-013-9682-3. Epub 2014 Jan 8.
3
Sense of coherence and self-concept in Lynch syndrome.

本文引用的文献

1
Parents' experience of cancer who have young children: a literature review.父母患有癌症且有年幼子女:文献综述。
Cancer Nurs. 2010 Mar-Apr;33(2):110-8. doi: 10.1097/NCC.0b013e3181c024bb.
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林奇综合征中的连贯感和自我概念。
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Development and validation of an instrument to measure the impact of genetic testing on self-concept in Lynch syndrome.中文译文:用于测量林奇综合征中基因检测对自我概念影响的工具的开发和验证。
Clin Genet. 2011 Nov;80(5):415-23. doi: 10.1111/j.1399-0004.2011.01770.x. Epub 2011 Oct 3.
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Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study.林奇综合征个体的自我概念影响有限;来自全国队列研究的结果。
Fam Cancer. 2011 Dec;10(4):633-9. doi: 10.1007/s10689-011-9459-5.
林奇综合征综述:历史、分子遗传学、筛查、鉴别诊断及法医学影响
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Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review.遗传性乳腺癌和卵巢癌基因检测后的情绪困扰:一项荟萃分析综述
Health Psychol. 2009 Jul;28(4):510-8. doi: 10.1037/a0014778.
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Intrusion and avoidance in subjects undergoing genetic investigation and counseling for hereditary cancer.遗传性癌症遗传咨询和基因检测受检者的入侵和回避行为
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The BRCA Self-Concept Scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers.BRCA 自我概念量表:一种用于测量 BRCA1/2 突变携带者自我概念的新工具。
Psychooncology. 2009 Nov;18(11):1216-29. doi: 10.1002/pon.1498.
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Surveillance colonoscopy improves survival in a cohort of subjects with a single mismatch repair gene mutation.监测性结肠镜检查可提高单错配修复基因突变受试者队列的生存率。
Colorectal Dis. 2009 Feb;11(2):126-30. doi: 10.1111/j.1463-1318.2008.01702.x.
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Psychosocial outcome following genetic risk counselling for familial colorectal cancer. A comparison of affected patients and family members.家族性结直肠癌遗传风险咨询后的心理社会结局。患病患者与家庭成员的比较。
Clin Genet. 2008 Nov;74(5):414-24. doi: 10.1111/j.1399-0004.2008.01089.x.
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