Psychometric testing of a scale designed to monitor the psychosocial and behavioral impact of genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC): a pilot study

• Main Author: LeDrew, Holly
• Format: Thesis
• Language: English
• Published: Memorial University of Newfoundland 2009
• Subjects: Newfoundland; Lynch
• Online Access: https://research.library.mun.ca/9293/; https://research.library.mun.ca/9293/1/Ledrew_Holly.pdf

The purpose of this pilot study was to conduct preliminary psychometric testing on the Hereditary Diseases and Genetic Testing (HD-GT) scale, which was designed to monitor the psychosocial and behavioral impact of genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC) or Lynch syndrome. The pilot was part of a larger study which is using a descriptive correlational design with longitudinal components to develop, validate and evaluate monitoring tools for individuals with genetic-based diseases. The framework for this study was the substantive theory, Confronting and Accepting the Challenges of Living in Families with Genetic-Linked Diseases (Way et al., 2008). -- The target population was individuals at 50% risk for inheriting HNPCC who had participated in genetic testing and were informed of their carrier status. Survey respondents were recruited from population-based probands comprising the Provincial Medical Genetics Program of Newfoundland and Labrador. Study participants (N = 75) were similar to the target population in terms of personal and illness-related characteristics. Data were collected by face-to-face interviews, telephone interviews and self-administered surveys between February and May 2008. -- Psychometric testing of the HD-GT scale was based on the work of Ware and Gandek (1998). Preliminary findings are indicative of good data quality and potential usability of the scale under variant administrative conditions. As well, all of the HD-GT subscales met the criteria for Likert scaling assumptions and evidence very good reliability and validity. -- The various subscales of the HD-GT augment what has been reported in the literature and also provide new insights into the psychosocial and behavioral impact of genetic testing for individuals and families with HNPCC. Study findings suggest that the family history of cancer does have a significant impact on decision-making regarding genetic testing. There are also indications that study respondents place high value on having all ...