Understanding Beliefs and Attitudes About Genetic Testing in Adults with Leiomyosarcoma and Their Family Members

What this Trial Is About

Researchers are exploring the beliefs and attitudes of patients with leiomyosarcoma LMS and their family members toward the heritability of LMS and genetic testing. This observational study aims to understand how LMS patients perceive genetic risks, their interest in genetic testing, and the impact of receiving genetic information on patients and their families. The study also considers the challenges in communicating genetic test results during cancer treatment and seeks to improve support for family communication regarding genetic risks. The study includes two groups LMS probands, who are the first in their families identified with a germline predisposition gene mutation related to LMS, and their relatives, with about four family members recruited per proband. Patients are identified through medical records and tumor registries. Participants will be assessed for their beliefs about LMS heritability and their interest in genetic testing. Genetic testing results focus on key genes such as TP53 and Rb1, which are linked to risks for various cancers beyond LMS. Participants will provide information shortly after enrollment about their beliefs and interest in genetic testing. The research will evaluate cognitive, emotional, and communication effects of genetic testing in patients with pathogenic variants. Family members responses to genetic testing will also be studied. The study involves interviews and surveys to collect this data, with assessments occurring within one day of enrollment. This work is designed to enhance understanding of genetic risk communication and its effects in LMS families.

Beliefs, Attitudes, and Response to Genetic Testing in SarcomaPatients