Development and validation of an instrument to measure the impact of genetic testing on self-concept in Lynch syndrome
Article first published online: 3 OCT 2011
© 2011 John Wiley & Sons A/S
Volume 80, Issue 5, pages 415–423, November 2011
How to Cite
Esplen, M., Stuckless, N., Gallinger, S., Aronson, M., Rothenmund, H., Semotiuk, K., Stokes, J., Way, C., Green, J., Butler, K., Petersen, H. and Wong, J. (2011), Development and validation of an instrument to measure the impact of genetic testing on self-concept in Lynch syndrome. Clinical Genetics, 80: 415–423. doi: 10.1111/j.1399-0004.2011.01770.x
- Issue published online: 5 OCT 2011
- Article first published online: 3 OCT 2011
- Accepted manuscript online: 26 AUG 2011 04:13AM EST
- Received 30 March 2011, revised and accepted for publication 22 August 2011
- genetic testing;
- hereditary nonpolyposis colorectal cancer;
- Lynch syndrome (LS);
Esplen MJ, Stuckless N, Gallinger S, Aronson M, Rothenmund H, Semotiuk K, Stokes J, Way C, Green J, Butler K, Petersen HV, Wong J. Development and validation of an instrument to measure the impact of genetic testing on self-concept in Lynch syndrome.
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.