Journal of Genetic Counseling

, Volume 20, Issue 3, pp 308–313 | Cite as

Validation of a Self-Concept Scale for Lynch Syndrome in Different Nationalities

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

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.

Keywords

HNPCC Hereditary nonpolyposis colorectal cancer Psychological impact Reliability Questionnaire Validity 

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Copyright information

© National Society of Genetic Counselors, Inc. 2011

Authors and Affiliations

  • Helle Vendel Petersen
    • 1
    • 2
    • 5
  • Katarina Domanska
    • 2
  • Pär-Ola Bendahl
    • 2
  • Jiahui Wong
    • 3
  • Christina Carlsson
    • 2
  • Inge Bernstein
    • 4
  • Mary Jane Esplen
    • 3
  • Mef Nilbert
    • 1
    • 2
  1. 1.Clinical Research Centre, Hvidovre University HospitalCopenhagen UniversityHvidovreDenmark
  2. 2.Department of Oncology, Institute of Clinical SciencesLund UniversityLundSweden
  3. 3.Department of Psychiatry, Faculty of Medicine, University of Toronto, Behavorial Sciences and Health Research DivisionUniversity Health NetworkTorontoCanada
  4. 4.HNPCC-register, Hvidovre University HospitalCopenhagen UniversityHvidovreDenmark
  5. 5.Clinical Research Centre 136Hvidovre HospitalHvidovreDenmark

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