Development and validation of an instrument to measure the impact of genetic testing on self-concept in Lynch syndrome

作者：Esplen M J^*; Stuckless N; Gallinger S; Aronson M; Rothenmund H; Semotiuk K; Stokes J; Way C; Green J; Butler K; Petersen H V; Wong J

来源：Clinical Genetics, 2011, 80(5): 415-423.

DOI：10.1111/j.1399-0004.2011.01770.x

• adjustment
• genetic testing
• hereditary nonpolyposis colorectal cancer
• Lynch syndrome (LS)
• psychosocial
• self-concept

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 alpha = 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.

• 出版日期2011-11