By clicking yes, I have read the above statement, attest that I am 18 years of age or older, and I agree to participate in this survey.
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Yes
No
Does the person you are answering this survey about have intellectual disability?
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Yes
No
What is your relation to the patient?
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Mother
Father
Sibling
Grandparent
Other family member (please specify)
Primary caregiver (no blood relation to patient)
Please specify how you would describe your relation to the patient.
How old is the patient currently? Please use the sliding scale to indicate their age.
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What sex was the patient assigned at birth?
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Female Male Other (please specify)
Please specify how you would describe the patient's sex assigned at birth.
What is the patient's race/ethnicity? (select all that apply)
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Please specify how you would describe the patient's race/ethnicity.
Which of the following best describes the patient's degree of intellectual disability?
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Mild (Generally can learn reading, writing and math skills between 3rd and 6th grade levels. May have a job and live independently.) Moderate (May be able to do some basic reading and writing. Able to learn skills like safety and self-help. Cannot live fully independent, but also doesn't need constant supervision.) Severe (Likely not able to read or write, but may learn some self-help skills and routines. Needs full time care and supervision.) Profound (May be able to communicate needs/wants verbally or with assistive devices. Needs intensive support and care.)
Is the underlying cause of the patient's intellectual disability known?
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Yes No
Please specify which chromosome disorder.
Please specify which illness.
Please specify the underlying cause of the patient's intellectual disability.
Has the patient ever been diagnosed with cancer?
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Yes No Unknown
Which type(s) of cancer was the patient diagnosed with?
Is there a family history of cancer?
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Yes - father's side only Yes - mother's side only Yes - both mother's and father's side No Unknown
Which of the following cancers are present in the family history? (select all that apply)
Please specify which other cancers are present in the family history, outside those listed in the previous question.
Has it been recommended that family members of the patient start cancer screening younger or more frequently based on the family history?
Yes No
Has anyone in the family had genetic testing of hereditary cancer risk genes (for example, BRCA1/2, CHEK2, ATM, Lynch syndrome genes, etc.) because of the family history?
Yes No Unsure
Was a mutation identified in any gene?
Yes No Unsure
In which gene was the mutation identified? If you are not sure, write "unknown."
Has the patient had genetic testing for the known familial mutation?
Yes No N/A
Has the patient ever had screening for breast, colon, or prostate cancer, such as a mammogram, a colonoscopy, or a prostate-specific antigen (PSA) blood level?
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Yes No
Which types of cancer screens has the patient undergone, and how frequently do these screens occur?
Outside of breast, colon, and prostate cancer screening, has screening for any other cancer type(s) been discussed for the patient (ex. PAP smear to screen for cervical cancer)?
Yes No Unsure
Please elaborate on which other types of cancer screenings have been mentioned or suggested for the patient outside of those listed in the previous question.
Is cancer screening a topic that has crossed your mind for the patient?
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Yes No
Have you ever brought up cancer screening for the patient to a medical provider?
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Yes No
Has the patient's medical provider ever asked about their family history of cancer?
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Yes No
Has the patient's doctor ever recommended cancer screening for them?
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Yes No
Has the patient's doctor ever said that certain screening would not be recommended or could be potentially dangerous?
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Yes No
What reasoning was provided by the doctor as to why a screen would not be recommended or would be potentially dangerous?
Who do you believe should start the conversation about cancer screening/surveillance for individuals with intellectual disability?
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It is the responsibility of the patient's physician/medical provider It is the parent(s)/caregiver's responsibility Other (please specify)
Please specify who should start the conversation about cancer screening for the patient, outside of the parties listed in the question above.
Compared to others in the family, do you think the patient's risk of developing cancer in their lifetime is...
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Higher Lower The same Not sure
Do you feel the patient would be able to undergo a colonoscopy? For reference, a colonoscopy is a common colon cancer screening test. The test takes about 15-30 minutes to complete and requires preparation the day before in order to clear out the bowels. During the procedure, the patient is sedated, and the doctor inserts a special camera into the anus to allow for examination of the intestines.
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Yes No
Do you feel the patient would be able to undergo a mammogram? For reference, a mammogram is a common breast cancer screening test that uses X-ray to take a picture of the breast. The patient's breast is placed on a flat plate and pressed down by another plate. This only takes a few seconds, but can cause discomfort for some patients.
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Yes No N/A
Do you feel the patient would be able to undergo a breast MRI? For reference, a breast MRI takes about 30 minutes to 1 hour to complete. The patient must remain as still as possible during the procedure. It is not an uncomfortable procedure, but IV is often used to transport the contrast dye, which requires a needle injection.
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Yes No N/A
Do you feel the patient would be able to undergo a prostate-specific antigen (PSA) exam? For reference, a PSA exam requires a small amount of blood to be drawn from one of the patient's veins, most likely from their arm, using a small needle. There may be a minor stinging sensation when the needle goes in or out of the arm. This blood draw generally takes less than 5 minutes to complete.
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Yes No N/A
What are your thoughts and opinions regarding cancer screening for the patient?
What discussions have healthcare providers caring for the patient had with you about cancer screening/surveillance for them?
Have you faced any barriers in trying to get cancer screening for the patient? If so, please describe the barriers.
Would you like to see anything done differently in regard to cancer screening for the patient?
What resources and information would be helpful to you as you navigate cancer screening for the patient?
Any other thoughts, comments, or feelings you would like to share?
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