Do patients with colorectal cancer understand that their family is at increased risk?
To be used after the primary care physician has been notified of our intent to contact a patient from the University of Chicago Cancer Registry.
“Hello. My name is ___________ and I am calling from the University of Chicago Hospitals. Dr. David Rubin is conducting a study about what patients with colorectal cancer know about the risk their family may be at for getting colorectal cancer. We were given your name and phone number by __________ (primary physician) who thought you might be willing to learn more about this study and possibly participate. You qualified for this survey solely because you have had colorectal cancer. We know nothing about the health of your family. Do you have 5 min to speak with me? If not, would there be a better time to call?
Thank you. This study is a telephone survey consisting of 12 questions. These questions will be about your understanding as a patient who has had colorectal cancer, about the risk your family may have for getting colorectal cancer. The purpose of this study is simply to assess the beliefs of the average patient so we can better direct patient education. If we can identify a way to improve this education it would be very helpful to future patients and their physicians.
Dr. Rubin and his staff will collect the following protected health information (PHI) from you during this study: name, address, telephone number and your medical record number. The PHI, demographic information and survey results collected will only be accessed by authorized study personnel. This information will not be disclosed to anyone outside the University. The records from this study may be kept for an indefinite amount of time.
The results of this study will be kept confidential and when the results are reported, you will not be identified as an individual in any way. You will not be compensated in any way for participation in this study.
By participating in this study, you will not be exposed to any risk. The study involves a brief telephone survey. After this survey we will be sending you a brochure about colon cancer, and we will be calling you in 6–7 months to ask you some follow up questions. Both calls will take about 5 min of your time. You may decide not to participate, or withdraw from this study, at any time and your decision will not affect or compromise your future care in any way.
If, after hearing about this study, you do not wish to participate, please feel free to say so. You may discontinue this survey at any time. If you choose to not participate at any time during this survey, your wish to not participate will not affect the care you are given by your doctors.
May I answer any questions?
Will you participate in our study?
(If the subject agrees to participate, proceed with the following)
Thank you for agreeing to participate. I will now ask you the questions.
Is there anyone else in your family who also has had colorectal cancer?
At what age were you diagnosed with colorectal cancer?
Could you please tell me what race you consider yourself to be?
Now I need to get an idea of the size of your family. Could you please tell me the approximate ages of all your living brothers, sisters and children? If you have had any brothers, sisters or children that have died, could you also please tell me the age at which they died and the year of their death?
For the rest of this survey, we will be asking questions about your brothers, sisters, and children as a group. We will refer to them as your family. So whenever we ask about your family, we are asking about your brothers, sisters and children together. Do you understand? (If no, explain again. If yes, proceed to question 6)
(If the patient does not have any family, proceed with the following)
I’m sorry, this makes you ineligible for this particular study. Thank you for your time. STOP
Since you have had colorectal cancer, do you think that puts members of your family at a higher risk, a lower risk, or the same risk of getting colorectal cancer compared to the general population?
As far as you know, according to the general recommendations, should members of your family be tested for colorectal cancer?
At what age should members of your family be tested?
From which of the following sources did you learn the answers to the questions I have just asked you: a doctor, a friend, the internet, a nurse, a family member, a magazine, television, or some other source I have not mentioned?
Which of the following types of doctors did you learn the information from: a gastroenterologist, an oncologist, a primary care physician, a surgeon, or some other type of doctor I have not mentioned?
Have you told any of your family members that they are at increased risk of getting colorectal cancer?
Which members of your family have you told?
Have you told any of your family members that they should be tested for colorectal cancer?
Which members of your family have you told?
Now that you have completed the survey, I would like to tell you some of the facts about the risk posed to your family members and the level of screening recommended by physicians. Your first-degree relatives, which includes brothers, sisters and children, are at increased risk of getting colorectal cancer. Their risk is almost twice that of the normal population, which is still small, but it is significant. The American Gastroenterological Association recommends that people with a first-degree relative with colon cancer be screened at age 40, or 10 years before their relative got colon cancer, whichever is younger. This screening can be by testing for blood in the stool, by taking an X-ray, or most commonly by looking in the colon with a camera in what is called either sigmoidoscopy or colonoscopy.
It is important that you tell your brothers, sisters and children what I have told you. They need to know that they are at increased risk and that they should talk to their doctor about being screened for colon cancer.
Are there any more questions I can answer for you?
(If the subject asks for more information, answer as appropriate then proceed with the following)
(Conclude with the following)
We very much appreciate your assistance with this study. If you have any additional questions, please feel free to call Dr. David Rubin.