Table 1 Mutation testing survey questions/responses
Demographics | |
|---|---|
Questions | Responses |
1. Please select the option that best describes you: | □ I’m the Patient □ I’m the Caregiver |
2. Patient’s Gender: Please select one of the following: | □ Male □ Female |
3. Patient’s Age: Which of the following best describes your age group? | □ Under 18 □ 19 to 30 □ 31 to 45 □ 46 to 59 □ 60 to 74 □ 75+ |
4. Patient’s Location: Where do you reside? ▼ United States (1) ... Zimbabwe ~ (503) | Country (1) State (2) |
Treatments | |
5. When were you diagnosed with GIST? This information is located on your pathology report. If you do not know the exact date, please provide an estimated date. | (MM/DD/YYYY) |
6. Please select the best option that describes the primary setting/facility where you received your GIST diagnosis | □ Large hospital or Academic Institution (Teaching hospital with an affiliated medical university) □ Local hospital (small-medium sized hospital) □ Private local doctor/physician or non-hospital based diagnostic center |
7. Which of the following best describes your tumor type at diagnosis? Single tumor refers to a tumor in one location; Multifocal tumors are two or more tumors within the same organ; Metastatic tumors or Mets refer to tumors located in different organs. | □ Single Tumor □ Multifocal □ Metastatic (Mets) |
8. Did your doctor (who diagnosed you with GIST) provide enough information about your GIST and your treatment plan before prescribing any treatment or testing? | □ Yes □ No □ I don’t remember/ I don’t know |
9. Which of the following best describes the events taken after your GIST diagnosis? Note: Treatment refers to any chemotherapy medication such as Gleevec, Sutent, Stivarga, etc. | □ Surgery and then started treatment □ Started treatment and then surgery □ Only Surgery □ Only Treatment □ Neither treatment nor surgery |
10. What was the date of your surgery? If you do not know the exact date, please provide an estimated date. | (MM/DD/YYYY) |
11. When did you start your first treatment? Note: Treatment refers to any chemotherapy medication such as Gleevec, Sutent, Stivarga, etc. If you do not know the exact date, please provide an estimated date. | (MM/DD/YYYY) |
12. Did you have progression or recurrence? Note: Progression refers to spread of the disease to a different site and recurrence refers to the tumor(s) returning to the same location after a period of time | □ Yes □ No |
13. When did you have your first progression or recurrence? If you do not know the exact date, please provide an estimated date. | (MM/DD/YYYY) |
Mutational Testing | |
There are different types of testing performed during the journey of GIST patients. One of them is mutational testing, which is also referred to as biomarker testing. This test aims to analyze/identify what genes are mutated within that tumor sample. Thus, the results from this test can be used both for diagnosis and for monitoring the success of a targeted therapy. Example of a mutational result can be: KIT exon 11 p. T574_E583dup Note: This test is different from pathology testing-which is used to differentiate GIST cells from other cancers by looking at the physiology of the cells. Example of this can be: CKIT positive and DOG1 negative | |
14. Have you had mutational testing done? | □ Yes □ No □ I do not know |
15. Please provide the date that you had mutational testing done. If you do not know the exact date, please provide an estimated date. | (MM/DD/YYYY) |
16. What were the results of your mutational test? Note: A drop-down list with genes commonly mutated in GIST was provided. ▼ BRAF (1) ... I do not know ~ I do not know (23) | Gene (1) Exon (2) |
17. Do you have a secondary mutation? | □ Yes □ No |
18. What are the results of your secondary mutation? ▼ BRAF (1) ... I do not know ~ I do not know (23) | Gene Exon |
19. Why was mutational testing done in your case? You can select more than one option | □ I had it done as part of a clinical trial □ My doctor ordered/suggested I have it done □ I asked my doctor to have it done □ The Life Raft Group advised/suggested I have it done □ I am not sure □ Other: Please specify below |
20. Did your treatment plan change based on your mutational testing results? Note: Treatment refers to any chemotherapy medication such as Gleevec, Sutent, Stivarga, etc. | □ Yes □ No □ I do not know |
21. How did your treatment plan change? | □ Switched treatment □ Increased dosage of current treatment □ Decreased dosage of current treatment □ Stopped treatment □ Other: Please specify below |
22. What is the name of the facility/lab where the mutational test was performed? You can find this information on the top portion of your mutational report. Examples of facilities/labs: FoundationOne, NIH, OHSU, MSK, Tempus. If you do not know the name of the facility/lab, please write N/A. | Free text field provided |
23. Did your doctor explain your mutational testing results? | □ Yes □ No □ I do not know/ I do not remember |
24. What is the name of the doctor who recommended/prescribed your mutational test? If the doesn’t apply to your case, please input N/A | Free text field provided |
25. What is the name of the institution where your doctor practices? If you do not know the name of the institution or this doesn’t apply to your case, please input N/A Examples of facilities/labs: FoundationOne, NIH, OHSU, MSK, Tempus. | Free text field provided |
26. Are you currently under the care of the same doctor that prescribed your mutational testing? | □ Yes □ No □ I did not have a doctor that prescribed/recommended mutational testing |
27. Why was mutational testing not done in your case? You can select more than one option | □ My doctor never mentioned it as a part of my treatment □ My doctor mentioned it but said I did not need it □ Cost/ Insurance □ Not enough tissue □ Mutational testing did not apply in my case (i.e., low risk, metastatic) □ I do not know □ Other: Please specify below |
28. Would you be willing to get mutational testing done if applicable in your case? | □ Yes □ No □ I do not know |
29. Do you have any comments or remarks that you would like to share with us about your mutational testing experience? | Free text field provided |