S U RV E Y: U N D E R S TA N D I N G FA M I LY V I E W S O N G E N E T I C S I N P E D I AT R I C O N C O LO GY
Dear parent or guardian –
Since your child has been diagnosed with cancer, you have likely been given a lot of information that is new and overwhelming. You may have heard about how genetics and your family’s medical history could be related to the cancer. We are interested in your views on if, when, and how YOU want to learn more about genetics to make decisions about genetics. This is an anonymous survey to potentially impact future patient care.
This survey will take about 5-10 minutes and is completely voluntary.
Completion of this survey will serve as your consent to be in this research study.
• You may decline to answer specific questions
• You may complete the survey today and return the form to the purple box (location)
• Or you may take it home and return the completed form to the purple box at a later date
If you have any questions, please feel free to call or email the study investigators: Joann Bodurtha (410-955-1699, [email protected]), Christy Smith (410-614-4389, [email protected]), or Christine Pratilas (410-502-4997, [email protected]).
1. Relation to the child: (Check one) ____Mother ____ Father ____ Other (please specify:_______________) 2. What is your (parent/guardian) racial background? (Check one)
White/
Caucasian Black/African
American Asian Native Hawaiian/
Pacific Islander American Indian/
Alaskan Native More than one
(specify below) Other
(specify below) Prefer not to say
Please specify: _______________________________________________
3. Are you Hispanic / Latino? (Check one) ____Yes ____No ____Prefer not to say 4. What is your child’s current age? ____Years ____Months
5. What is your child’s cancer diagnosis (or diagnoses) and what age(s) was your child diagnosed?
Diagnosis: _____________________________________________ Age: ____Years ____Months Diagnosis: _____________________________________________ Age: ____Years ____Months Diagnosis: _____________________________________________ Age: ____Years ____Months 6. Have you ever shared your family history of cancer with your child’s doctor? (Check one)
a a a a a a a a
____ Yes ____ No ____ Unsure ____ Not Applicable (i.e. no known family history of cancer)
7. What, if any, sources of information have you used to learn whether your child’s cancer may have a genetic contribution? (Check all that apply)
Brochure / printed materials Friends / family Oncology doctor / nurse Internet search Genetic professional (ex. genetic counselor) Social media Other (please specify): ___________________________
8. Are you interested in learning more about genetic counseling/testing for your child?
____ Yes ____ No ____ Unsure
If yes, what information / facts about genetics are you most interested in learning?
_________________________________________________________________________________________
9. What factors, if any, would influence your interest in genetic counseling/testing? (Check all that apply)
If the information might affect my child’s treatment If my doctor recommends it If it would impact my family member’s / my own healthcare If the test was free or low-cost If I could use the information for family planning If my child was older
Other (please specify): ____________________________ If my child’s treatment was complete
10. How would you want to receive information about genetic counseling/testing? (Check all that apply) Your answer(s) to this question will be considered when developing plans for future patient care.
Brochure/
printed materials Oncology
doctor/nurse Genetics
professional Website Video Unsure
Other (please specify): __________________________________________________
11. When would be a good time to share information about genetic counseling/testing? (Check all that apply) Your answer(s) to this question will be considered when developing plans for future patient care.
At diagnosis Within 1-2 months
of diagnosis Within 3-6 months
of diagnosis Within 7-12 months of
diagnosis Only when I ask
Other (please specify): __________________________________________________
Any other suggestions or comments?
a
a a a a a a a
a a a
a a a a
a
a a a a a
a
a a
a a
____________________________________________________________________________________________
Thank you for completing the survey!
Please return the form to the purple box.