Development and testing of the Hereditary Diseases and Genetic Testing (HD-GT) scale

Christine Way,Deborah Gregory,Valerie Ludlow,Kathy Watkins,Patrick Parfrey,Mary Esplen,Holly Ledrew

doi:10.1186/1897-4287-9-s1-o3

Abstract

Background Despite the expanding research base on the genetic testing process, limited insight exists on how personal understandings of hereditary cancer as well as situational and contextual factors influence an individual’s decisionmaking prior to and following predictive testing for hereditary non-polyposis colorectal cancer (HNPCC). The failure of existing scales to detect psychosocial and behavioral difficulties in this population has led researchers to question the adequate sensitivity of these instruments. The purpose of this study was to develop and validate measures for evaluating the preparedness for and experiences during and following predictive testing for HNPCC.

Highlights

Despite the expanding research base on the genetic testing process, limited insight exists on how personal understandings of hereditary cancer as well as situational and contextual factors influence an individual’s decisionmaking prior to and following predictive testing for hereditary non-polyposis colorectal cancer (HNPCC)
The Hereditary Diseases and Genetic Testing (HD-GT) scale consists of 8 scales designed to measure acceptance of hereditary-based diseases and engagement in the genetic testing process
Study findings suggest that the family history of cancer does have a significant impact on decision-making regarding genetic testing

Summary

Introduction

Despite the expanding research base on the genetic testing process, limited insight exists on how personal understandings of hereditary cancer as well as situational and contextual factors influence an individual’s decisionmaking prior to and following predictive testing for hereditary non-polyposis colorectal cancer (HNPCC). The failure of existing scales to detect psychosocial and behavioral difficulties in this population has led researchers to question the adequate sensitivity of these instruments.

Objectives

Methods

Results

Conclusion