Fear of Cancer Occurrence: Development and Initial Psychometric Testing of a Fear Measure for Breast Cancer Previvors
Investigating Fear of Cancer in Women at Higher Risk of Breast Cancer
Shelley Johns
Primary Investigator
Brief description of study
To develop a measure of cancer-related fear in previvors, women with an increased risk of developing breast cancer within their lifetime but have never had a cancer diagnosis. Two existing fear measures will be used to develop the initial fear of cancer occurrence (FOCO) measure, then two rounds of cognitive interviews will be performed. The study team will conduct two rounds of cognitive interviews, enrolling breast cancer previvors until five participants complete each round. Upon finishing the first round, the team will analyze results and revise the measure to ensure wording is meaningful to previvors before commencing the second round of cognitive interviews. Finally, we will field test the measure in a survey battery which will examine psychological flexibility among breast cancer previvors and assess the psychometric properties of the new FOCO measure.
Detailed description of study
Participants will be asked to either complete one semi-structured cognitive interview, lasting approximately 90 minutes, or a one-time survey battery requiring approximately 30 minutes. Participants may only complete one aspect of the study (cognitive interview or survey batter completion).. Participants will interact with the study staff via mail, e-mail, Zoom video-conferencing, telephone calls, and/or text message.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Breast Cancer Previvor
-
Age: 18 years - 100 years
-
Gender: Female
Inclusion criteria:
1. Female gender
2. Age 18 years or older
3. Pathogenic variant that imparts moderate to high risk such as, but not limited to: ATM, BRCA1, BRCA2, CHEK2, PALB2, PTEN, STK11, and/or TP53
4. Reports being bothered by fear of cancer occurrence: in the past 12 months, in the 3 months before and 3 months after routine breast cancer screening visits, in the 3 months before and 3 months after routine breast imaging (i.e., mammogram, breast ultrasound and/or breast MRI), upon breast self-examination, and/or with an abnormal finding on breast imaging
5. Internet access with camera capability 6. Resident of the U.S.
This study investigates the fear of cancer occurrence in women who are at a higher risk of developing breast cancer but have not been diagnosed. These women are known as 'previvors.' The purpose of this study is to create a new measure to understand their fear better. Two existing tools will be used to develop this new measure, called the Fear of Cancer Occurrence (FOCO) measure. This study will involve two rounds of interviews to make sure the measure is clear and meaningful to the participants.
Participants will either take part in a 90-minute interview or complete a 30-minute survey. These activities will be done through mail, email, video calls, phone calls, or text messages. The study aims to test the new measure's properties and see how it can help understand the participants' psychological flexibility.
- Who can participate: Women aged 18 years or older, who have a genetic variant increasing their risk for breast cancer, can participate. They should have experienced fear of cancer occurrence recently and have internet access with a camera. Participants must live in the U.S.
- Study details: Participants will either complete a semi-structured interview or a survey. They will interact with the study team through various communication methods, including mail and video calls.
