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Table 2 Examples of women’s information needs regarding risk assessment, screening and prevention, stratified by country

From: European women’s perceptions of the implementation and organisation of risk-based breast cancer screening and prevention: a qualitative study

NetherlandsSwedenUnited Kingdom
Risk assessment
 Which factors contribute to my risk?What factors make up your risk?I would like to know how risk factors are measured.
 How do you calculate risk?What do they do to assess your risk?Why weren’t we tested for BRCA?
 How reliable is this risk measurement?What is the risk scale based on?Which factors specifically contributed to my risk?
 Will the risk model be reassessed if a lot of (below) average women still develop breast cancer?How often can/should you have your risk assessed?My letter said something about genetic risk, but I didn’t understand it.
 What does my risk mean? How can I lower my risk?
 What role do hormones play in breast cancer risk?  
 From whom will I receive support if necessary?  
 What are the consequences of my risk?  
 What are the risk cut-off scores?  
Screening
 How can you monitor yourself between mammograms?How quickly do breast cancers grow?How reliable are my mammograms if cancers are difficult to detect due to my dense breasts?
 At what point should you start worrying (changes to breasts, etc.)?When does my risk increase sufficiently that I move from average to above average and get more screening? 
 What are the risks if you don’t receive biennial screening?  
 Provide contact details of professional to contact if you desire screening before allocated interval.  
 Is the decreased screening frequency based on scientific evidence?  
 Are there other screening modalities for high risk, such as an ultrasound or MRI?  
 What are the risks of higher radiation exposure?  
Lifestyle
 How much effort is required to decrease you breast cancer risk?Will my risk be reassessed after I’ve changed my lifestyle?Missed opportunity that not all women were informed of the link between lifestyle and breast cancer risk.
 How can you measure the effects of lifestyle changes on breast cancer risk?How quickly does your breast cancer risk change after you’ve made lifestyle changes? 
 Where can you go for lifestyle advice?  
 I need scientific evidence on the link between lifestyle and breast cancer.  
 How much do I have to pay if I want to participate in a lifestyle programme?  
 By how much can lifestyle decrease your risk?  
 I need a unified message on diet.  
 Is diet or exercise more effective?  
 How do I lower my risk if I already have a healthy lifestyle?  
Risk-reducing medication
 How does tamoxifen reduce your risk?Does tamoxifen have any side effects?Will there be a follow-up procedure?
 Why do I only need to take it for five years?How does tamoxifen work?How great is the risk reduction of tamoxifen?
 Can I take tamoxifen in combination with other medication?Are the side effects permanent or do they disappear when you stop taking the medication?Do the effects of tamoxifen outweigh the risks caused by an unhealthy lifestyle?
 Will tamoxifen still work as a treatment for breast cancer when I’ve already used it preventatively?How do you measure the risk reduction after you’ve started on the tamoxifen?Will taking tamoxifen for less than five years still be helpful, or do more harm than good?
 What is the magnitude of the risk reduction that you can accomplish with tamoxifen?How many women have taken tamoxifen preventatively? 
 What are the short and long term side effects?Is it safe to stop taking tamoxifen after five years? 
 What are alternatives to tamoxifen?What are alternatives to tamoxifen? 
 Is tamoxifen well tested?How well tested is tamoxifen? 
 How much do I have to pay for tamoxifen?How does tamoxifen affect the menopause? 
 Will the risk-reducing effects of tamoxifen last forever?Is your risk gone after you’ve taken tamoxifen for five years? 
 Can the effectiveness of tamoxifen in lowering my risk be measured?