A Cross-sectional Study of Regret in Cancer Patients After Sharing Test Results for Pathogenic Germline Variants of Hereditary Cancers With Relatives
Naomi Fukuzaki1, Yoshimi Kiyozumi, Satomi Higashigawa
1Author Affiliations: Department of Nursing, Shizuoka Cancer Center Hospital (Dr Fukuzaki and Ms Suishu); Division of Genetic Medicine Promotion, Shizuoka Cancer Center (Drs Kiyozumi, Horiuchi, and Matsubayashi; Ms Higashigawa; Dr Nishimura); Tokyo Metropolitan Institute of Medical Science (Dr Horiuchi); Division of Endoscopy, Shizuoka Cancer Center (Dr Matsubayashi); Division of Breast Surgery, Shizuoka Cancer Center Hospital (Dr Nishimura); Clinical Research Center, Shizuoka Cancer Center (Drs Mori and Notsu); Shizuoka Cancer Center Research Institute (Ms Ohnami and Dr Kusuhara); and Shizuoka Cancer Center (Dr Yamaguchi), Japan; Department of Biobehavioral Nursing Science, College of Nursing, University of Illinois Chicago (Dr Doorenbos); and Graduate School of Health Management, Keio University (Dr Takeda), Tokyo, Japan.
Background:
Research on whole genome/exome sequencing is increasing worldwide. However, challenges are emerging in relation to receiving germline pathogenic variant results and sharing them with relatives.
Objective:
The aim of this study was to investigate the occurrence of and reasoning related to regret among patients with cancer who shared single-gene testing results and whole exome sequencing with family members.
Methods:
This was a single-center, cross-sectional study. The Decision Regret Scale was administered, and descriptive questionnaires were used with 21 patients with cancer.
Results:
Eight patients were classified as having no regret, 9 patients were classified as having mild regret, and 4 patients were classified as having moderate to strong regret. Reasons patients felt that sharing was the right decision included the following: to allow relatives and children to take preventive measures, the need for both parties to be aware of and ready for the hereditary transmission of cancer, and the need to be able to discuss the situation with others. On the other hand, some patients did not think it was a good decision to share the information because of the associated anxiety.
Conclusions:
Regret over sharing test results for pathogenic germline variants of hereditary cancers with relatives tended to be low. The main reason was that patients believed that they were able to benefit others by sharing.
Implications For Practice:
Healthcare professionals need to understand the postsharing perceptions and experiences of patients and support them throughout the sharing process.
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