Behavioral Sciences and Health Research Division, Toronto General Research Institute, University Health Network, Toronto, Canada.
Clin Genet. 2011 Nov;80(5):415-23. doi: 10.1111/j.1399-0004.2011.01770.x. Epub 2011 Oct 3.
A positive genetic test result may impact on a person's self-concept and affect quality of life. The purpose of the study was to develop a self-concept scale to measure such impact for individuals carrying mutations for a heritable colorectal cancer Lynch syndrome (LS). Two distinct phases were involved: Phase 1 generated specific colorectal self-concept candidate scale items from interviews with eight LS carriers and five genetic counselors, which were added to a previously developed self-concept scale for BRCA1/2 mutation carriers, Phase II had 115 LS carriers complete the candidate scale and a battery of validating measures. A 20-item scale was developed with two dimensions identified through factor analysis: stigma/vulnerability and bowel symptom-related anxiety. The scale showed excellent reliability (Cronbach's α = 0.93), good convergent validity by a high correlation with impact of event scale (r(102) = 0.55, p < 0.001) and Rosenberg self-esteem scale (r(108) = -0.59, p < 0.001), and a low correlation with the Fear questionnaire (r(108) = 0.37, p < 0.001). The scale's performance was stable across participant characteristics. This new scale for measuring self-concept has potential to be used as a clinical tool and as a measure for future studies.
阳性基因检测结果可能会影响个人的自我概念，并影响生活质量。本研究旨在开发一种自我概念量表，用于衡量携带遗传性结直肠癌林奇综合征（LS）突变个体的这种影响。该研究包括两个不同阶段：第 1 阶段通过对 8 名 LS 携带者和 5 名遗传咨询师的访谈，从先前为 BRCA1/2 突变携带者开发的自我概念量表中生成了特定的结直肠自我概念候选量表项目；第 2 阶段有 115 名 LS 携带者完成了候选量表和一系列验证措施。通过因子分析确定了两个维度，开发了一个 20 项的量表：耻辱/脆弱性和与肠道症状相关的焦虑。该量表显示出极好的可靠性（Cronbach's α = 0.93），与事件影响量表（r(102) = 0.55，p < 0.001）和罗森伯格自尊量表（r(108) = -0.59，p < 0.001）高度相关，与恐惧问卷（r(108) = 0.37，p < 0.001）相关较低。该量表在参与者特征方面表现稳定。这种用于衡量自我概念的新量表具有作为临床工具和未来研究衡量标准的潜力。
