Understanding risk perception and risk-reducing decision-making for surgery among individuals with a genetic predisposition to epithelial ovarian cancer.
Risk perception and decision-making for surgery in genetically predisposed individuals are influenced by both objective information and personal factors, with healthcare providers playing a key role.
Where it sits
this study against the rest of the goserelin corpusSummary and findings
This study explored how individuals with a genetic predisposition to epithelial ovarian cancer perceive risk and make decisions about risk-reducing surgery. It involved 63 surveys and 20 interviews to assess the integration of objective risk information with personal factors. Participants considered perceived risk, control, family planning, hormonal impacts, and recovery in their decision-making.
Abstract
Genetic predisposition to hereditary breast and ovarian cancer and Lynch syndrome increases the risk of developing cancer, including epithelial ovarian cancer (EOC). Depending on the pathogenic variant, (e.g., BRCA1 or PMS2) the risk of developing EOC ranges from approximately 3%-60%. To reduce this risk, many individuals are offered risk-reducing salpingo-oophorectomy (RRSO), a procedure in which fallopian tubes and ovaries are removed. Some centers have dedicated programs that provide targeted care for individuals at risk of gynecologic cancers, such as the Hereditary Gynecology Clinic in Winnipeg, Manitoba. To better understand how individuals across a spectrum of risk values for developing EOC interpret their personal risk and make decisions regarding RRSO, we conducted a convergent mixed-methods study involving an online survey and virtual interview. Sixty-three surveys and twenty interviews were completed. Participants viewed objective risk information as a starting point, to which 'experiential knowledge' and perceived control were applied and integrated into their personal subjective risk assessment. Perceived risk was intertwined with cancer worry, and individuals made decisions regarding RRSO based on factors such as perceived risk, control, family planning, hormonal impacts, and recovery. Importantly, healthcare providers exerted both direct and indirect influences on the decision-making process.
Background
This study addresses the decision-making process for risk-reducing surgery among individuals with a genetic predisposition to epithelial ovarian cancer. Prior research has established the increased risk associated with genetic variants like BRCA1 and PMS2, but understanding how individuals perceive and act on this risk remains crucial. This study aims to fill that gap by examining subjective risk assessment and decision-making factors.
Methods
A convergent mixed-methods study design was used, involving an online survey and virtual interviews. The study included 63 survey participants and 20 interviewees. The primary focus was on understanding personal risk perception and decision-making regarding risk-reducing salpingo-oophorectomy. No specific doses or interventions were reported, as the study was observational.
Results
The study found that participants used objective risk information as a baseline, integrating it with personal experiences and perceived control to form a subjective risk assessment. Perceived risk was closely linked to cancer worry, influencing decisions about undergoing risk-reducing surgery. Factors such as family planning, hormonal impacts, and recovery were also considered. Healthcare providers played a significant role in shaping these decisions.
Interpretation
The findings highlight the complexity of decision-making in individuals with a genetic predisposition to cancer, where objective risk is only one component. The study suggests that healthcare providers need to consider the broader context of personal and experiential factors when advising patients. While the sample size limits generalizability, the insights are consistent with existing literature on risk perception and decision-making in hereditary cancer contexts.
Key findings
- 63 surveys and 20 interviews completed.
- Risk of developing EOC ranges from 3%-60% depending on genetic variant.
- Participants integrated objective risk with experiential knowledge.
- Perceived risk was linked to cancer worry.
- Healthcare providers influenced decision-making.
Limitations
- small n=63 for surveys and n=20 for interviews
- self-reported data may introduce bias
- limited generalizability due to sample size
- observational study design