Eight (30%) of the 27 people invited to participate in the focus group attended. Reasons for not attending included a desire to keep their genetic status a private matter or lack of interest in participating in such a group (n = 12) and logistics (n = 7). Sixteen (62%) of the 26 mailed questionnaires were completed and returned.
shows the characteristics of the focus group participants, the respondents to the mailed questionnaire and the nonparticipants. The study population consisted mainly of married, middle-aged women with at least 1 child.
Cancer risk perception
For the 18 subjects with a previous cancer diagnosis, the mean recalled estimated risk of acquiring a second cancer was 46% (range 10%–90%) before genetic counselling and 57% (range 30%–100%) after test results were received (p < 0.001, paired t-test). For the 6 participants and respondents who did not have a previous diagnosis of cancer, the mean recalled lifetime cancer risk estimate was 27.5% (range 10%–50%) before genetic counselling and 47.5% (range 15%–80%) after test results were received (p = 0.01, repeated-measures analysis of variance).
Worry about cancer
Of the 24 participants and respondents, 14 (58%) were not or a little worried about acquiring cancer, and 10 (42%) were moderately or very worried, before receiving their genetic test results. Eighteen subjects (75%) indicated that their distress level had increased after they received the test results (p = 0.002). Comments included: “Now I see cancer in my future whereas before I would have seen it in my past” and “I feel I am enveloped in a black cloud that never goes away. I fear for my children in a way I never did before.”
Communication with family members
One of the focus group participants, with a previous diagnosis of cancer, said that she had told no one in her family of her results because she “was not sure they'd want to know.” Another did not have any immediate living relatives to tell. The other 6 focus group participants and 12 (75%) of the respondents reported telling all their immediate family members of their test results. The remaining 4 respondents stated that they felt some relatives were too young to receive this sensitive information or that they did not feel close enough to certain relatives to share the results.
Reported reactions of family members were distributed fairly evenly as either “a little” (10/24 [42%]) or “moderately” (9/24 [38%]) worried about both the proband and their own risk.
Attitudes toward surveillance
Confidence in cancer surveillance was high among the 22 women: 18 (82%) indicated a confidence level of 5 to 7 for breast cancer screening, and 9 (90%) of the 10 who still had their ovaries indicated a confidence level of 5 to 7 for ovarian cancer screening. Of concern was that 1 woman with a previous diagnosis of cancer stated: “The increased vigilance has actually improved my chances of not having a recurrence ... . Prophylactic surgery will lessen the risk as well.” The 2 men indicated a confidence level of 4 and 5 for prostate cancer screening.
Attitudes toward prevention options
Only 1 subject had undergone prophylactic mastectomy, a decision made before she learned her genetic test results. Fifteen (68%) of the 22 women did not favour prophylactic mastectomy, but 9 of them would consider it if it were strongly recommended in the future.
Prophylactic oophorectomy was a much more acceptable option. Twelve (54%) of the 22 women had already had this surgery. Seven (70%) of the remaining 10 women indicated they would consider this option at a later time or were seriously considering it.
Twelve (71%) of the 17 women with a previous diagnosis of cancer were already taking tamoxifen or had completed their 5-year treatment. Thus, chemoprevention was not an option for them. However, 4 (80%) of the 5 women without a personal history of cancer reported that they would consider chemoprevention at a later date.
All of the subjects gave the highest confidence ratings to diet and lifestyle alterations (e.g., changes in exercise, alcohol consumption and smoking habits), with 77% assigning a confidence rating of 4 or greater.
Satisfaction with clinical services
Twenty-two subjects (92%) assigned a rating of 5 or greater for satisfaction with the clinical services they had received; however, all indicated their dissatisfaction with the lengthy wait for their genetic test results ().
Need for additional support
Five (62%) of the 8 focus group participants reported that they would favour a regular support group, meeting either monthly or semiannually. Most indicated that they would be happy with a peer-led group or a professionally led group. One subject commented:
It is good to listen to other experiences, to know others are feeling the same way, get helpful hints sometimes when you least expect it, sometimes a helpful book title. Also, sometimes groups help you to realize how well you are, and sometimes you help someone else just by a comment or sharing.
Only 4 (25%) of the 16 respondents indicated an interest in a support group. The other respondents felt that support from family and friends was meeting their needs.
Almost all of the subjects (22 [92%]) indicated an interest in follow-up with the genetic counselling team. The reasons stated included updates on new research studies or treatments, and an opportunity to have their psychological well-being assessed.
Satisfaction with decision to undergo genetic testing
All of the respondents indicated that they would undergo genetic testing once again, knowing everything they do now.