Barriers to Clinical Trials_Caregivers_HOPE Summit 2017

A clinical trial is a type of research study that tests how well medical approaches—screening, prevention, diagnosis, or treatment—work in people. Clinical trials can provide access to new approaches to lung cancer patients. However, most lung cancer patients do not participate in clinical trials. Please complete this survey about clinical trials by answering from your personal experience. The survey is 100% anonymous. THANK YOU for your time.

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* 1. What type of lung cancer does the patient have? (Select one.)

Non-small cell lung cancer (NSCLC): Type unspecified

Non-small cell lung cancer (NSCLC): Adenocarcinoma

Non-small cell lung cancer (NSCLC): Squamous cell lung

Non-small cell lung cancer (NSCLC): Large cell lung cancer

Small cell lung cancer (SCLC)

Carcinoid or neuroendocrine tumor

Not sure

Other (please specify)

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* 2. Which stage best describes the stage of the patient’s disease? (Select one.)

Stage I NSCLC

Stage II NSCLC

Stage III NSCLC

Stage IV/Advanced-stage NSCLC

Metastatic NSCLC

Limited Stage SCLC

Extensive Stage SCLC

Not sure

Other (please specify)

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* 3. Was the patient's tumor tested for biomarkers? In biomarker testing (also known as molecular or tumor testing), the doctor removes a small piece of cancer tissue through a biopsy and sends it to a pathology laboratory for testing. Presence or absence of specific biomarkers may help guide treatment decisions, such as use of targeted therapy or immunotherapy. (Select one.)

Yes

Not sure

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* 4. For what biomarkers was the patient’s tumor tested? Select all that apply. Please skip if you have responded NO to question 3.

ALK

BRAF

EGFR

HER2

KRAS

MET

NTRK

PD-L1

RET

ROS

Not sure

Other (please specify)

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* 5. When was testing performed? Select all that apply. Please skip if you have responded NO to question 3.

At the time of diagnosis

Before treatment was started

After initial treatment was started, because the cancer came back

After second treatment was started, because the cancer came back

Not sure

Other (please specify)

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* 6. What treatment(s) has the patient ever received (either currently or in the past) for lung cancer? (Select all that apply.)

Chemotherapy

Radiation therapy

Targeted drug therapy (drug that attacks a specific mutation, e.g., Tarceva)

Angiogenesis inhibitor (drug that stops the growth of new blood vessels that feed the tumor, e.g., Avastin)

Palliative care (treatment of symptoms of lung cancer or side effects of treatment)

Immunotherapy (drug that helps the body recognize and fight the lung cancer, e.g., Opdivo)

Surgery

Not sure

Other (please specify)

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* 7. Which decision-making role about the patient’s participation in clinical trials best describes you? (Select one.)

I do not make or influence decisions about participation in a clinical trial

I have some influence over decisions about participation in a clinical trial

I have a major influence over decisions about participation in a clinical trial

I am the primary decision maker about participation in a clinical trial

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* 8. Has the patient ever participated in a clinical trial of a new drug for his/her type of lung cancer? (select one.)

Yes

Not sure

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* 9. Would the patient consider participating in a future clinical trial of a new drug for his/her type of lung cancer? (Select one.)

Yes

Not sure

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* 10. Please explain the reason for your answer in question 9 (Why/Why not?).

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* 11. Has the patient ever participated in a clinical trial that involves an existing (already approved) drug for his/her type of lung cancer? (Please select one.)

Yes

Not sure

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* 12. Would the patient consider participating in a future clinical trial of an existing (already approved) drug for his/her type of lung cancer? (Select one.)

Yes

Not sure

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* 13. Please explain the reason for your answer in question 12 (Why/Why not?).

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* 14. How would you and the patient like to receive information about clinical trials? (Select one.)

From the patient's doctor

From patient advocacy groups (e.g. LUNGevity)

From companies developing new drugs

Online through websites such as clinicaltrials.gov

Not interested in learning about clinical trials

Other (please specify)

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* 15. How important is each of the following factors in deciding whether or not the patient will participate in a clinical trial, where 1 = very unimportant and 5 = very important?

	1 = Very Unimportant	2 = Somewhat unimportant	3 = Neither important not unimportant	4 = Somewhat important	5 = Very important
Distance to study center	Distance to study center 1 = Very Unimportant	Distance to study center 2 = Somewhat unimportant	Distance to study center 3 = Neither important not unimportant	Distance to study center 4 = Somewhat important	Distance to study center 5 = Very important
Number of visits to the study center	Number of visits to the study center 1 = Very Unimportant	Number of visits to the study center 2 = Somewhat unimportant	Number of visits to the study center 3 = Neither important not unimportant	Number of visits to the study center 4 = Somewhat important	Number of visits to the study center 5 = Very important
Length of time spent on each visit to study center	Length of time spent on each visit to study center 1 = Very Unimportant	Length of time spent on each visit to study center 2 = Somewhat unimportant	Length of time spent on each visit to study center 3 = Neither important not unimportant	Length of time spent on each visit to study center 4 = Somewhat important	Length of time spent on each visit to study center 5 = Very important
Type and frequency of monitoring tests	Type and frequency of monitoring tests 1 = Very Unimportant	Type and frequency of monitoring tests 2 = Somewhat unimportant	Type and frequency of monitoring tests 3 = Neither important not unimportant	Type and frequency of monitoring tests 4 = Somewhat important	Type and frequency of monitoring tests 5 = Very important
Cost of participation in the clinical trial	Cost of participation in the clinical trial 1 = Very Unimportant	Cost of participation in the clinical trial 2 = Somewhat unimportant	Cost of participation in the clinical trial 3 = Neither important not unimportant	Cost of participation in the clinical trial 4 = Somewhat important	Cost of participation in the clinical trial 5 = Very important
Scientific rationale for the clinical trial	Scientific rationale for the clinical trial 1 = Very Unimportant	Scientific rationale for the clinical trial 2 = Somewhat unimportant	Scientific rationale for the clinical trial 3 = Neither important not unimportant	Scientific rationale for the clinical trial 4 = Somewhat important	Scientific rationale for the clinical trial 5 = Very important
Potential side effects	Potential side effects 1 = Very Unimportant	Potential side effects 2 = Somewhat unimportant	Potential side effects 3 = Neither important not unimportant	Potential side effects 4 = Somewhat important	Potential side effects 5 = Very important
How many patients have participated in the trial to date	How many patients have participated in the trial to date 1 = Very Unimportant	How many patients have participated in the trial to date 2 = Somewhat unimportant	How many patients have participated in the trial to date 3 = Neither important not unimportant	How many patients have participated in the trial to date 4 = Somewhat important	How many patients have participated in the trial to date 5 = Very important
How patients who have already participated in the trial feel	How patients who have already participated in the trial feel 1 = Very Unimportant	How patients who have already participated in the trial feel 2 = Somewhat unimportant	How patients who have already participated in the trial feel 3 = Neither important not unimportant	How patients who have already participated in the trial feel 4 = Somewhat important	How patients who have already participated in the trial feel 5 = Very important
If some participants in the study are given the current approved treatment and not the new treatment	If some participants in the study are given the current approved treatment and not the new treatment 1 = Very Unimportant	If some participants in the study are given the current approved treatment and not the new treatment 2 = Somewhat unimportant	If some participants in the study are given the current approved treatment and not the new treatment 3 = Neither important not unimportant	If some participants in the study are given the current approved treatment and not the new treatment 4 = Somewhat important	If some participants in the study are given the current approved treatment and not the new treatment 5 = Very important
If all participants receive the new treatment	If all participants receive the new treatment 1 = Very Unimportant	If all participants receive the new treatment 2 = Somewhat unimportant	If all participants receive the new treatment 3 = Neither important not unimportant	If all participants receive the new treatment 4 = Somewhat important	If all participants receive the new treatment 5 = Very important
Whether will know in advance which treatment group I will be in	Whether will know in advance which treatment group I will be in 1 = Very Unimportant	Whether will know in advance which treatment group I will be in 2 = Somewhat unimportant	Whether will know in advance which treatment group I will be in 3 = Neither important not unimportant	Whether will know in advance which treatment group I will be in 4 = Somewhat important	Whether will know in advance which treatment group I will be in 5 = Very important

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* 16. How likely would you be to need each type of support in order to participate in a clinical trial in which you and the patient would visit the study center regularly, e.g., monthly, where 1 = I would be unlikely to need this and 3 = I would definitely need this?

	1 = I would be unlikely to need this.	2 = This would be nice, but not necessary.	3 = I would definitely need this.
Reimbursement for public transportation	Reimbursement for public transportation 1 = I would be unlikely to need this.	Reimbursement for public transportation 2 = This would be nice, but not necessary.	Reimbursement for public transportation 3 = I would definitely need this.
Parking voucher/reimbursement for study center visits	Parking voucher/reimbursement for study center visits 1 = I would be unlikely to need this.	Parking voucher/reimbursement for study center visits 2 = This would be nice, but not necessary.	Parking voucher/reimbursement for study center visits 3 = I would definitely need this.
Mileage reimbursement for drive to appointments	Mileage reimbursement for drive to appointments 1 = I would be unlikely to need this.	Mileage reimbursement for drive to appointments 2 = This would be nice, but not necessary.	Mileage reimbursement for drive to appointments 3 = I would definitely need this.
Reimbursement for taxi or car service to/from appointments	Reimbursement for taxi or car service to/from appointments 1 = I would be unlikely to need this.	Reimbursement for taxi or car service to/from appointments 2 = This would be nice, but not necessary.	Reimbursement for taxi or car service to/from appointments 3 = I would definitely need this.
Reimbursement for childcare	Reimbursement for childcare 1 = I would be unlikely to need this.	Reimbursement for childcare 2 = This would be nice, but not necessary.	Reimbursement for childcare 3 = I would definitely need this.
Meal vouchers or reimbursement for study center visits	Meal vouchers or reimbursement for study center visits 1 = I would be unlikely to need this.	Meal vouchers or reimbursement for study center visits 2 = This would be nice, but not necessary.	Meal vouchers or reimbursement for study center visits 3 = I would definitely need this.
Hotel stay reimbursement	Hotel stay reimbursement 1 = I would be unlikely to need this.	Hotel stay reimbursement 2 = This would be nice, but not necessary.	Hotel stay reimbursement 3 = I would definitely need this.
Air travel reimbursement	Air travel reimbursement 1 = I would be unlikely to need this.	Air travel reimbursement 2 = This would be nice, but not necessary.	Air travel reimbursement 3 = I would definitely need this.
Travel agent to arrange travel for your study center visits	Travel agent to arrange travel for your study center visits 1 = I would be unlikely to need this.	Travel agent to arrange travel for your study center visits 2 = This would be nice, but not necessary.	Travel agent to arrange travel for your study center visits 3 = I would definitely need this.
Reloadable pre-paid debit card for expenses related to study center visit	Reloadable pre-paid debit card for expenses related to study center visit 1 = I would be unlikely to need this.	Reloadable pre-paid debit card for expenses related to study center visit 2 = This would be nice, but not necessary.	Reloadable pre-paid debit card for expenses related to study center visit 3 = I would definitely need this.
Nurse visits to the patient's house or going to a nearby clinic for blood draws and other tests (instead of traveling to the study center)	Nurse visits to the patient's house or going to a nearby clinic for blood draws and other tests (instead of traveling to the study center) 1 = I would be unlikely to need this.	Nurse visits to the patient's house or going to a nearby clinic for blood draws and other tests (instead of traveling to the study center) 2 = This would be nice, but not necessary.	Nurse visits to the patient's house or going to a nearby clinic for blood draws and other tests (instead of traveling to the study center) 3 = I would definitely need this.

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* 17. What is the farthest distance you and the patient would be willing to travel every month to participate in a clinical trial? (Select one.)

Under 25 miles

25-100 miles

101-200 miles

201-500

501-1000 miles

1000+ miles away

It would depend (please specify factors)

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* 18. What is your age? (Select one.)

21-34

35-44

45-54

55-64

65-74

75 or older

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* 19. What is your gender?

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* 20. What is your annual household income? (Select one.)

Less than $25,000

$25,000-$74,999

More than $75,000

Prefer not to answer

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* 21. What is the highest level of education you have completed? (Select one.)

Some high school

High school graduate or GED

Some college education

Some technical school

College graduate

Technical school graduate

Graduate/professional school

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* 1. What type of lung cancer does the patient have? (Select one.)

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* 2. Which stage best describes the stage of the patient’s disease? (Select one.)

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* 4. For what biomarkers was the patient’s tumor tested? Select all that apply. Please skip if you have responded NO to question 3.

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* 5. When was testing performed? Select all that apply. Please skip if you have responded NO to question 3.

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* 6. What treatment(s) has the patient ever received (either currently or in the past) for lung cancer? (Select all that apply.)

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* 7. Which decision-making role about the patient’s participation in clinical trials best describes you? (Select one.)

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* 8. Has the patient ever participated in a clinical trial of a new drug for his/her type of lung cancer? (select one.)

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* 9. Would the patient consider participating in a future clinical trial of a new drug for his/her type of lung cancer? (Select one.)

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* 10. Please explain the reason for your answer in question 9 (Why/Why not?).

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* 11. Has the patient ever participated in a clinical trial that involves an existing (already approved) drug for his/her type of lung cancer? (Please select one.)

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* 12. Would the patient consider participating in a future clinical trial of an existing (already approved) drug for his/her type of lung cancer? (Select one.)

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* 13. Please explain the reason for your answer in question 12 (Why/Why not?).

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* 14. How would you and the patient like to receive information about clinical trials? (Select one.)

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* 15. How important is each of the following factors in deciding whether or not the patient will participate in a clinical trial, where 1 = very unimportant and 5 = very important?

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* 16. How likely would you be to need each type of support in order to participate in a clinical trial in which you and the patient would visit the study center regularly, e.g., monthly, where 1 = I would be unlikely to need this and 3 = I would definitely need this?

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* 17. What is the farthest distance you and the patient would be willing to travel every month to participate in a clinical trial? (Select one.)

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* 18. What is your age? (Select one.)

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* 19. What is your gender?

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* 20. What is your annual household income? (Select one.)

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* 21. What is the highest level of education you have completed? (Select one.)

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* 22. Where do you live (City)?

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* 23. Where do you live (State)?