Introduction
Methods
Sample
Procedure
Opinions on a risk prediction program using risk stratification approach
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Risk stratification means that women can be grouped based on their likelihood of getting ovarian cancer. Women can be described as having a low, intermediate or high risk. The level of risk is based on a woman’s genetic risk and other risk factors. Identifying genetic risk involves having a blood test. Identifying other risk factors would involve filling in questionnaires about cancer family history, background and health information. Scientists can then put all of this information together and estimate whether a women is at low, intermediate or high risk. It is estimated that 50–60 % of women will be at low risk, 30–45 % at intermediate risk, and 4–7 % at high risk |
Opinions on possible risk management options
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Depending on a woman’s risk level (low, intermediate or high), she would receive different levels of risk management for ovarian cancer. Women at low risk would receive information telling them that they are at low risk and that they do not need further monitoring. This information would also let low-risk individuals know about symptoms of ovarian cancer. Women at intermediate risk would receive screening every year (screening involves a blood test to check for levels of the biomarker CA-125 followed by transvaginal ultrasound). Those at high risk would be screened every 4 months. High-risk women may also be referred to a specialist to discuss risk-reducing surgery |
Data analysis
Results
Participant | Age | Genetic testing | Genetic testing result | Risk-reducing surgery | Screening | |
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BSO | Mx | |||||
HROC_02 | 38 | No | – | Yes | No | No |
HROC_03 | 42 | Yes | No mutation | Yes | No | No |
HROC_04 | 45 | Yes | No mutation | Yes | No | Yes—until BSO |
HROC_05 | 35 | Yes | BRCA2 +ve | No | Yes | Yes |
HROC_06 | 37 | Yes | BRCA1 +ve | No | No | No |
HROC_07 | 58 | No | – | No | No | Yes |
HROC_08 | 29 | Yes | BRCA1 +ve | No | No | No |
HROC_10 | 25 | Yes | BRCA1 +ve | No | Yes | No |
Ovarian cancer perceptions
Coupled with the lack of information available in the general community, participants were also fearful of OC. This was exacerbated by the lack of effective methods to detect the cancer; giving the impression that OC is an ‘invisible’ disease which may not be identified until an advanced stage due to the vague symptoms associated with OC such as bloating and pelvic or abdominal pain. When compared to breast cancer, participants felt OC was a more complex and worrying disease. Despite BRCA1/2 carriers being at higher relative risk for breast cancer (up to 80 %) compared to OC (with risks of up to 40 %) [17], participants felt less concerned about breast cancer because they perceived there was greater awareness about the disease, and early detection and screening methods were more effective.So yeah, hearing that I did have that risk, like I said, that was quite a shock to me. I hadn’t really linked the two, I guess because we didn’t know for a while that it was a genetic thing. I always thought it was breast cancer that came my way. I didn’t realise that I was such high risk for ovarian. (HROC_05)
I think also, as well, there is so much more information out there about breast cancer that it doesn’t frighten me as much, I think because it is more easily detectable. I think the whole thing about the potential for an ovarian tumour, the whole thing that frightened me so much about it was that it is so hard to detect. You know, it is not something that would show up on a smear, you wouldn’t necessarily have lumps protruding from your stomach, it is very, very difficult to detect it and I think that was a big part of the fear factor for me, was I could have this, I could already have this and it would be relatively well advanced and I wouldn’t necessarily know, you know. Whereas in the case of breasts, you know, if you are doing the checks, you are going to find a lump. (HROC_02)
Attitudes towards PROMISE 2016
There were varying opinions on how the program would be received by the female population. A number of participants felt that the majority of eligible women would be interested and willing to be involved in the program to learn their risk for OC, but others felt that interest and motivation would be low given the lack of awareness about OC and associated risk factors. Participants felt that a family history of cancer or existing worries about developing OC would motivate participation.I think if you are looking around your family and thinking there’s so many cancers, you know, what have I got, what am I going to get, I think it might also be a reassurance that no, these are just really bad luck and it’s not necessarily something that’s destined to come your way. It could be quite a good reassurance for people whose risks they perceive to be higher than they actually are. (HROC_05)
In terms of the suggested screening and interventions for the risk-stratified groups, participants felt that for the low risk group receiving information about OC, in particular potential symptoms, was sufficient. Interest in annual and 4-monthly screening, respectively, for the intermediate and high risk groups was tempered by concerns about the efficacy of screening.That’s the thing. If you are high risk, also, then you can then go down my route. If you are low risk you are just becoming more aware of just general health issues. But if you are intermediate I don’t know what the benefit would be to know really because you wouldn’t necessary get the… well, I don’t know, maybe you would. Would you go and have a hysterectomy? I don’t know. That would be my question. (HROC_06)
Knowledge and information
Given this desire for knowledge, participants insisted that the risk prediction program must provide information not only regarding the risk-management aspect of the program, but about OC itself. In their previous experiences they had struggled to find accurate and reliable information regarding risk factors, symptoms, screening and preventive options. As a result participants described wanting as much information as possible. They felt this information would need to be an integral part of the risk prediction program to allow women in the population to make an informed decision about participation in the program.Gosh, I mean, I had the option before I went for the genetic test, obviously, not to go for it, but, for me, no, I wanted to know. It was forewarned is forearmed. I can do something about it. (HROC_05)
If you know what you are looking out for, you know, it could be that you do actually just have IBS, but equally, you might not and I think the more women know and the more information they have, they can make the rational decisions themselves about do I need to seek medical help here or, you know, can I maybe leave it a little while and see if simple analgesia and a hot water bottle makes me feel better? But I think the more information people have, by far and away the better. (HROC_02)
Risk communication
Participants had many suggestions about how risk estimates should be communicated in the OC risk prediction and stratification program such as numeric risk estimates, preferably percentages, and descriptive estimates. Comparisons to general population risks were recommended to help women put their risk in perspective. The challenge of using only one risk format for a large diverse female population was acknowledged and reflected in the lack of consensus about what the preferred format should be. There was agreement that the ‘higher’ risk estimates such as 1 in 10 would be more meaningful than trying to interpret ‘lower’ risks such as 1 in 1,000 or 1 %. Clear distinctions in risk estimates between the three risk groups—high, intermediate and low—would be important so that women would be aware of not only their risk estimate but also risk ‘classification’.I am not saying it’s right or wrong, but I have always been told, “You don’t need it. You just need to know your at-risk age. You have got the gene. You are high risk, we know that. We need to work out your at-risk age category.” So, for me, it’s, like, it’s very early 40s and that’s what I have always worked on. (HROC_06)
Because if you are 1 in a 1,000 and you are low risk, it does sound, oh, it’s never going to happen to me, it’s never going to happen to the 1 in a 1,000, it’s never going to happen to me. Whereas if you are intermediate risk then it needs to be a bit more clear that, you know, it is a higher risk. (HROC_06)
Psychological support
Other participants who had not undergone BSO described the importance of not dwelling on OC risks; while they acknowledged that risks remain, rumination was not seen as a helpful strategy.I just have to turn it into a positive thing and, you know, even the normal, you know, people without the gene have got a higher risk than me now. So it’s a good thing and something that my mum and the rest of the family couldn’t have done. (HROC_10)
It was encouraging that the participants in this study were able to use different coping strategies to manage their high risk status. Although the risks remain ‘at the back of the mind’, they were able to continue their lives. Given the psychological burden most women at high risk for OC may face, it is not surprising that all participants spoke about the need for psychological and emotional support to be provided within the program. Ideally support would be available before and after receiving OC risk estimates, with a preference for face-to-face interactions with either a psychologist or genetic counsellor.The things that I can do, I have done, but I am not prepared at the moment to think about the option of surgery again until it becomes a greater risk… I feel like I have done what I can at the moment but I don’t want to, kind of, tie myself up in mental knots by having to think about it too much now. I am doing all I can realistically, I think. (HROC_05)
It is, and I think based on my own experiences and going by what I could have done with and didn’t have access to, I think for women at all levels of risk, the one thing I would say would be ensure that there is some form of emotional support, even if, as part of the study, you made it mandatory. (HROC_02)
Interactions with health professionals
But it does come down to a doctor in a lot of ways but I think it’s the GPs often because that the first port of call before you even get to there. I mean, my mother must have gone to a GP many times before she got to see a consultant, many times, many, many, many times. So it’s the GPs, really, who can be a stumbling block and it’s often about… What I feel personally, is there’s a lot of emphasis on things like heart disease and diabetes and obesity and the, kind of, women issues tend to get just […dismissed]. (HROC_04)