FH-Risk 2.0: Updating breast cancer risk estimates
Research type
Research Study
Full title
Recalculating breast cancer risk and exploring the experience of receiving updated breast cancer risk estimates in women with a family history of breast cancer
IRAS ID
290959
Contact name
Victoria Woof
Contact email
Sponsor organisation
The University of Manchester
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Summary of Research
How do women (who attend Family History Risk and Prevention Clinics) who have previously received a breast cancer risk estimate view and experience a more accurate and revised estimate?
Women at Family History, Risk and Prevention Clinics (FHRPC) are given estimates of future breast cancer risk based on family history, hormone and lifestyle factors. Women who attend these clinics receive information about their risk level. Moderate and high women can discuss and make decisions to reduce risk. We are getting better at estimating risk because we are learning about new factors to add into calculations. For example, adding information from a woman’s mammogram or their DNA. This means that a woman’s risk estimate can change. There is little research exploring the experience of women who receive a changed breast cancer risk estimate. From a patient and public perspective this research is important because breast cancer risks will inevitably change as we learn more about breast cancer risk factors. It is going to be important to assess how women feel about receiving changed risk estimates and also how they feel these changes should be communicated.
In this research we will recalculate breast cancer risk for women who previously took part in a study called the Family History Risk Study. These women will be invited for a consultation with a consultant to discuss their new risk estimate. Following this consultation, women will be invited to participate in a one-to-one interview to discuss their consultation, their experience of receiving a changed estimate, their perceptions of their risk, their communication needs and their feelings toward their changed estimate. These interviews will be used to inform the creation of information materials which will be assessed and appraised by those who have received changed risk estimates.
The results of this study will be used to inform whether national clinical guidelines need to be changed and will help staff in the FHRPC when seeing women to talk about their breast cancer risk. The results will also be used to develop questionnaires to find out the psychological impact of receiving changed risk estimates on the rest of the women (over 900) who took part FH-Risk.
Summary of Results
Following updated risk feedback we interviewed twenty-two women from the FH-Risk who received an updated risk estimate which had either increased or decreased from their initial estimate that was recorded at entry to the FHRPC. In this interview study we wanted to explore how women experienced and understood a change in their breast cancer risk estimate. Eleven women who received an increased risk and eleven women who received a decrease in their breast cancer risk shared their views with us. They explained that they had never really thought of their breast cancer risk changing, believing it would stay the same due to their family history. Therefore when a lower risk was communicated some women were surprised but relieved but for those where a risk increased, this was less surprising as they had been an increased risk most of their lives. Women described the communication of their updated risk estimate and change in their risk as a positive experience. This was attributed to the reputation of the clinic and healthcare professional communicating the change in risk. Women explained that this helped them trust the information being communicated. Women thought knowing their breast density was important and understood that this new risk factor and a polygenic risk score contributed to their change in risk. Particularly it was found that women’s appraisals of their risk were in line with the risk estimate communicated. This is not often reported in the risk communication literature. Finally, no longer being eligible for annual screening was worrying for some, with some women apprehensive about population screening. Overall, this study demonstrated to us that women from the FH-Risk study responded positively to their updated breast cancer risk estimates and trusted the information, even when it led to changes in preventive management options.
As this interview study appeared to demonstrate to us that women’s appraisals of their risk were in line with the updated risk estimate provided and that women could accurately demonstrate why their risk had changed, we developed a questionnaire to distribute to the wider FH-Risk cohort to see whether similar findings would be found at a whole group level. One hundred and ninety women completed this questionnaire and it was found that women's personal risk appraisals aligned with the updated risk estimates, with age, a polygenic risk score and breast density accounting for most of the differences. Women who were informed of an increased risk also had higher subjective risk perceptions compared to those whose risk stayed the same or decreased. These studies together highlighted that women’s breast cancer risk appraisals can change with the communication of new risk factor information.
Overall, from this body of work we have demonstrated that women react positively to an update to their breast cancer risk and trust and understand the information being imparted. We believe this is due to the healthcare professional communicating the information, women’s ability to understand and apply the ‘gist’ of the information to form accurate appraisals and the consistency of care received at the clinic. Future research should carry out similar research in other clinic and healthcare settings to assess whether these findings are specific to the centre of excellence it was carried out in or demonstrated across other healthcare settings.REC name
HSC REC A
REC reference
21/NI/0130
Date of REC Opinion
2 Sep 2021
REC opinion
Further Information Favourable Opinion