Psychometric testing of scales designed to monitor the psychosocial impact of arrhythmogenic right ventricular cardiomyopathy: a pilot study

• Main Author: Baker, Erin
• Format: Thesis
• Language: English
• Published: Memorial University of Newfoundland 2017
• Subjects: Newfoundland
• Online Access: https://research.library.mun.ca/12559/; https://research.library.mun.ca/12559/1/thesis.pdf

This pilot study validated two psychometric scales, the Psychosocial Adjustment to Hereditary Disease (PAHD) and the Hereditary Diseases and Genetic Testing (HD-GT) scales, for use in the Newfoundland and Labrador Arrhythmogenic Right Ventricular Cardiomyopathy population. Both scales were previously validated in the Newfoundland hereditary non-polyposis colorectal cancer (HNPCC) population. The target population for this study was individuals born at an a priori 50% risk for the TMEM43 mutation that causes ARVC who had undergone genetic testing. In total, 73 participants returned completed surveys. Psychometric testing of both scales followed the procedures outlined by Ware and Gandek (1998) and demonstrated satisfactory data quality, reliability and validity. Results indicated potential usefulness in the ARVC population warranting analysis with a larger sample size. No large-scale differences were found between carriers and non-carriers; however, small differences in particular aspects of psychosocial adjustment based on gender, gender of transmitting parent, and age were found.