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1. Lorraine says "There was suddenly so much to take in...I always went to appointments with him so we could both try to remember most of what was said". Think about when you are delivering complex information to your patients or clients. How often do you pause to check their understanding?
2. Imagine the parents in another family refused to tell their teenage children of the risks to their own health. Should you, as a healthcare practitioner involved in their care, tell them?
1. Lorraine says "I can’t understand why they didn’t link it with FAP then". Think about Paul’s story and Lorraine’s perspective on this. What ‘warning flags’ are there in their accounts that should have alerted health professionals involved in Paul’s care to the possible nature of his condition? Outline briefly what you think these are.
2. For people in Paul’s situation, individuals who have a positive test can have colon screening and potentially preventive surgery. Do you think gene testing in this situation is different from genetic testing for a condition such a Huntington’s disease where no preventive action is possible? List the potential advantages and disadvantages of testing in both situations.
"When the results came through and we realised our children had a 50/50 chance of having FAP it was quite a shock. Having to tell them was really hard and then they each had to decide whether to have a test to find out."
The Polyposis Registry (established in 1924) has lots of information relating to FAP.
Familial Adenomatous Polyposis patient information and support site FAP gene
Cancer Research UK has information on the high risk groups for bowel cancer
NHS Evidence - genetic conditions briefings: Hereditary colon cancer
National Genetics Education and Development Centre website: FAP
US National Library of Medicine, Genetics Home Reference: Familial Adenomatous Polyposis