The Experiences and Needs of Individuals with a Variant of Uncertain Significance on Genetic Tests for Hereditary Cancer Syndromes:A Grounded Theory Study
Author Department
Oncology; Medicine
Document Type
Article, Peer-reviewed
Publication Date
2-2026
Abstract
Objectives: The use of multigene panel testing to identify hereditary cancer susceptibility has led to a growing number of individuals receiving a variant of uncertain significance (VUS) result. This qualitative study aimed to describe the experiences of individuals with a VUS, with a focus on their communication with healthcare providers (HCPs) and family members.
Methods: This study employed a constructivist grounded theory approach. Participants (N = 20) were recruited between January and July 2021 through social media and nonprofit organizations. Data were collected using semistructured interviews and verified transcripts.
Results: Categories identified included motivations, communication with family, family characteristics, communication with HCPs, other factors affecting the testing experiences, feelings about having a VUS, recall and understanding of the test result and its implications, coping strategies used, and risk management strategies used.
Conclusions: The proposed theoretical model included the key themes impacting the experience: context; decision-making; communication with HCPs and family; and the need for knowledgeable and trustworthy providers; met emotional needs; and open lines of communication. This model provides a framework to be used to meet the needs of individuals with VUS from pre- to post-testing process.
Implications for nursing practice: The proposed theoretical model offers guidance for structuring patient-centered care, emphasizing the importance of trust, continuity, and accessible support from pre- to post-testing. Integrating this framework into nursing practice can enhance patient understanding, reduce uncertainty, and promote informed decision-making regarding risk management.
Keywords: Cancer; Genetic testing; Hereditary cancer; Patient experience; VUS.
Recommended Citation
Gould D, Walker R, Makari-Judson G, Seven M. The Experiences and Needs of Individuals with a Variant of Uncertain Significance on Genetic Tests for Hereditary Cancer Syndromes:A Grounded Theory Study. Semin Oncol Nurs. 2026 Feb 19:152148. doi: 10.1016/j.soncn.2026.152148. Epub ahead of print.
PMID
41720719