Journal: European journal of human genetics : EJHG
This publication examines how different care delivery models for hereditary breast and ovarian cancer (HBOC) testing affect patient experience, with a particular focus on whether patients receive formal genetic counseling.
Study design:
- • 501 patients undergoing HBOC genetic testing completed a 35‑item survey.
- • Instruments included:
- • Genetic Counseling Satisfaction Scale
- • Decision Regret Scale
- • Modified Royal Marsden Satisfaction Questionnaire
- • Clinical and demographic data were supplemented from medical records.
- • Analyses used descriptive statistics and Fisher’s exact tests.
Key findings:
Differences between service models, and between those who did and did not attend genetic counseling, were seen in four specific aspects of the testing experience:
- • Whether patients received written or other informational materials before testing.
- • Whether patients were informed that they could have additional discussions with the genetics team.
- • How clear the expected timeline for receiving results was.
- • How clearly the method of result delivery (e.g., in person, phone, letter/portal) was explained.
Despite these differences:
- • Overall satisfaction with the genetic testing process was high across all models.
- • Decision regret related to undergoing testing was low, regardless of service model or counseling participation.
Implications:
- • Service model structure and access to formal genetic counseling shape certain informational and process-related aspects of patient experience.
- • Alternative or streamlined care models aimed at increasing access to HBOC testing can still maintain high satisfaction and low regret, provided core informational needs are addressed.