title: Development and validation of an instrument to measure the impact of genetic testing on self-concept in Lynch syndrome.
abstract: 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.
authors: Behavioral Sciences and Health Research Division, Toronto General Research Institute, University Health Network, Toronto, Canada. mesplen@uhnres.utoronto.ca
authors: M J
authors: MJ
authors: Esplen
authors: N
authors: N
authors: Stuckless
authors: S
authors: S
authors: Gallinger
authors: M
authors: M
authors: Aronson
authors: H
authors: H
authors: Rothenmund
authors: K
authors: K
authors: Semotiuk
authors: J
authors: J
authors: Stokes
authors: C
authors: C
authors: Way
authors: J
authors: J
authors: Green
authors: K
authors: K
authors: Butler
authors: H V
authors: HV
authors: Petersen
authors: J
authors: J
authors: Wong
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000209:etiology; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000235:genetics* / Q000523:psychology*; D005260:Female; D005820:Genetic Testing; D006579:Heterozygote; D006801:Humans; D008297:Male; D008875:Middle Aged; D011581:Psychological Tests; D015203:Reproducibility of Results; D012649:Self Concept; D011795:Surveys and Questionnaires