Breast Cancer in Young Women

Insurance Coverage, Employment Status, and Copayments/Deductibles Faced by Young Women Diagnosed with Breast Cancer

Attachment 3 - Mail-in Survey English_20160216

Breast Cancer in Young Women Survey

OMB: 0920-1123

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F orm Approved

OMB No. 0920-xxxx

Exp. Date xx/xx/xxxx





Breast Cancer in Young Women Survey







Sponsored by

The Centers for Disease Control and Prevention



















Public reporting burden of this collection of information is estimated to average 22 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; ATTN: PRA (0920-xxxx).



Tips for Filling out the Survey

  • Please share your honest opinions. All of your answers are kept private.

  • Please use a BLACK or DARK BLUE ink pen to mark your answers.

  • Be sure to read all of the answer choices before marking your answer.

  • Sometimes the instruction will say to skip one or more questions. Look for notes telling you whether you should skip a question. If there is no note, go to the next question.

  • Answer all questions by putting an “X” in the box next to your answer, like this:

Shape1

Example



Shape2



1. In the past month, did you have any headaches?

Shape3

Yes

No Go to Question 3

Don’t know Go to Question 3

2. In the past month, how many times did you have a headache?

Shape4

12 times

35 times

6 times or more

Don’t know



3.

Please select YES or NO for each item

1YES

2NO

Did you respond to this question?

Example question 2





  1. Insurance Status

This section asks about your health insurance status.

A1. What type of medical insurance do you have now? Please mark ALL that apply.

1 None and I do not receive charity care

2 None and I receive charity care

3 Insurance available through my employer or union (including HMO)

4 Insurance available through my spouse’s employer or union (including HMO)

5 Insurance that I purchase with financial assistance (subsidy) from the state or federal government (Obamacare, Affordable Care Act)

6 Insurance that I purchase myself, not through an employer

7 Medicaid or other state insurance (including coverage by Medicaid authorized by Breast and Cervical Cancer Prevention and Treatment Act)

8 Medicare

9 CHAMPVA and TRICARE

10 Indian Health Service

11 Other (please specify): ______________________

A2. What type of medical insurance did you have at the time of your initial breast cancer diagnosis? Please mark ALL that apply.

1 None and I did not receive charity care

2 None and I received charity care

3 Insurance available through my employer or union (including HMO)

4 Insurance available through my spouse’s employer or union (including HMO)

5 Insurance that I purchased with financial assistance (subsidy) from the state or federal government (Obamacare, Affordable Care Act)

6 Insurance that I purchased myself, not through an employer

7 Medicaid or other state insurance (including coverage by Medicaid authorized by Breast and Cervical Cancer Prevention and Treatment Act)

8 Medicare

9 CHAMPVA and TRICARE

10 Indian Health Service

11 Other (please specify): ______________________

A3. While you were receiving your initial breast cancer treatment including hormonal treatment, did you ever reach your insurance plans’ treatment ceiling, which is the total amount that the insurance company will pay for your treatment?

1 Yes

2 No

A4. Which best describes your insurance status over the past 12 months?

1 Insured continuously by same insurance plan

2 Insured continuously but switched insurance plan

3 Uninsured for some months

4 Uninsured for all of the 12 months

A5. Did you experience any of the following during the past 12 months?
Please mark ALL that apply.

1 Lost your health insurance coverage

2 Paid a higher price than expected to obtain health insurance coverage

3 Could not buy health insurance coverage because it was too expensive

4 Was turned down when you tried to buy health insurance coverage

5 Had a specific health condition excluded from the health insurance coverage

6 Did not experience any of the above

A6. In the past 12 months, have the costs of your prescription medicine(s) been…

Please mark ONE response.

1 …completely covered by health insurance (except for copayments or deductibles)?

2 …partially covered by health insurance (except for copayments or deductibles)?

3 …not covered at all by health insurance (except for copayments or deductibles)?



B. Financial Burden and Out of Pocket Costs

The next few questions are about the financial challenges you may have encountered following your breast cancer diagnosis.

B1. Due to your own personal medical expenses (including co-payments, deductibles, hospital bills, medication costs, and insurance premiums), did you or someone in your household in the past 12 months experience any of the following financial impacts? Please mark ALL that apply.

1 Went without health insurance

2 Stopped working or lost job

3 Had utilities turned off because the bill was not paid

4 Cut down on spending for medication for my self

5 Had to move out of house or apartment because we could not afford to stay there

6 Had to declare bankruptcy or are in the process of declaring bankruptcy

7 Cut down on expenses in general such as food, recreational activities, educational

activities

8 I took out a loan or borrowed against my car or home

9 My illness has had no impact on my household finances. GO TO QUESTION B3

10 Other (please specify/explain): ___________________________________________

B2. How much is the decline in financial situation due to your breast cancer and treatment?

1 Not much at all

2 A little

3 Somewhat

4 Quite a bit

5 Very much

B3. How much money would you estimate you have paid out-of-pocket in the past 12 months for medical expenses related to your breast cancer including co-payments, hospital bills, deductibles, and medication costs— including hormonal therapy and other medications to help prevent cancer recurrence? For this question, please think of out-of-pocket money that you spent and not money provided by your insurance company.

1 Less than $500

2 $500–$2,000

3 $2,001–$5,000

4 $5,001–$10,000

5 More than $10,000

B4. How did you pay for these out-of-pocket expenses including copayments, hospital bills, deductibles, and medication costs for medical services – including medications to help prevent cancer recurrence?
Please mark ALL that apply.

1 I used my personal / household income and/or savings

2 I used funds from my Health Saving Account

3 I borrowed money from family or friends

4 I received support from a cancer support organization or other charities including online crowdsourcing – fundraising

5 I borrowed money against my house or other belongings (car).

6 I left some of my medical bills unpaid

7 I increased my credit card debt

8 I postponed payment of some bills including student loans, credit cards, utilities, etc.

9 I sold personal belongings (example: car, jewelry)

10 Other (please specify): ____________________________________________

B5. How much money would you estimate you have paid in the past 12 months for other expenses related to your breast cancer such as travel costs, parking, child/elderly care, etc?

1 Less than $500

2 $500–$2,000

3 $2,001–$5,000

4 $5,001–$10,000

5 More than $10,000

B6. How did you pay for these other expenses related to your breast cancer such as travel costs, parking,child/elderly care, etc? Please mark ALL that apply.

1 I used my personal / household income and/or savings

2 I borrowed or received money from family or friends

3 I received support from a cancer support organization or other charities including online crowdsourcing – fundraising

4 I borrowed money against my house or other belongings (car)

5 I left some of my medical bills unpaid

6 I increased my credit card debt

7 I postponed payment of some bills including student loans, credit cards, utilities, etc.

8 I sold personal belongings (example: car, jewelry)

9 Other (please specify): ____________________________________________



B7. Because of your medical cost, did you have to…

Please select YES or No for each item

1YES

2NO

a. …delay or stop breast cancer treatment?

b. …go without any medication prescribed?

c. …take less than the fully prescribed amount of a prescription?

d. …miss a doctor’s appointment?

e. …miss a follow-up mammogram, MRI, or ultrasound?

f. …delay or did not receive breast reconstruction?

g. …forgo fertility preservation?



B8. How would you describe your reaction to how your medical benefits (health insurance including Medicaid and Medicare) covered the cost of your cancer treatment?
The medical benefits contributed…

1 …more money than I expected

2 …about what I expected

3 …less money than I expected

4 …Not applicable as I did not have health coverage or insurance

B9. How would you describe your reaction to the money you spent for cancer treatment? I spent…

1 …more money than I expected

2 …about what I expected

3 …less than I expected

B10. Did you ever discuss the cost of treatment for your cancer with your care team?

1 Yes

2 No

B11. When choosing a treatment course for your cancer, did you consider the costs of specific treatments?

1 No, not at all

2 Yes, somewhat

3 Yes, a great deal



C. Employment Status

The next few questions are about the status of your employment.

C1. At the time you were diagnosed with breast cancer, were you employed or working for pay?

1 Yes

2 No GO TO QUESTION C9

C2. Which of these best describes the job you held at the time you were diagnosed with breast cancer?

1 Employee of a PRIVATE or NONPROFIT company (working for pay)

2 A FEDERAL government employee

3 A STATE government employee

4 A LOCAL government employee

5 Worked for self (e.g. operated a business, professional practice or farm)

6 Don’t know

C3. On average, about how many hours per week did you work 1 month before your diagnosis?

1 1 – 8 hours per week

2 9 – 16 hours per week

3 17 – 32 hours per week

4 33 – 40 hours per week

5 More than 40 hours per week

C4. Which of the following has been available to you during treatment for your initial breast cancer diagnosis (surgery, chemotherapy, radiation or targeted therapy) through your work?
Please mark ALL that apply.

1 Medical insurance

2 Paid sick leave

3 Unpaid sick leave

4 Disability benefits

5 Flexible work schedule

6 Flexible work location (e.g., working from home)

7 None of the above

8 Other (please explain): _________________________

C5. In total, about how many days of work did you miss because of your breast cancer or its treatment?

1 I was not working

20 days

3 1 – 7 days

4 8 – 14 days

5 15 – 21 days

6 22 – 29 days

7 More than 30 days

8 I stopped working all together



C6. As a result of your breast cancer or its treatment, did you have any of the following experiences?

Please select YES or No for each item

1YES

2NO

a. I changed jobs within the company to accommodate my breast cancer diagnosis

b. I avoided changing jobs because I was worried about losing my health insurance

c. I changed jobs and began working for a new company in order to get health insurance

d. I took time off with pay

e. I took time off without pay

f. I quit my job

g. I decided to retire early

h. I lost (was fired from or was laid off) my job

i. I had trouble doing my job well

j. I decided to keep my job to avoid losing my health insurance

k. I increased my work hours in order to cover my breast cancer related medical expenses

l. Other (please explain):



C7. Overall, how supportive was your employer of you when you were being treated for breast cancer?

1 My employer did not know about my breast cancer diagnosis

2 Very supportive

3 Somewhat supportive

4 Neutral

5 Somewhat not supportive

6 Not supportive at all




C8. Please indicate if your employer did any of the things below to help you when you were being treated for breast cancer.

My employer…

Please select YES or No for each item

1YES

2NO

a. …gave me permission to take the necessary time off for treatments

b. …allowed me to have a flexible schedule so I could get treatments

c. …paid me for sick days

d. Other (please explain):







C9. Are you currently working for pay?

1 Yes

2 Not now, but I plan to seek future employment GO TO QUESTION C11

3 Not now, nor in the foreseeable future GO TO QUESTION C11

C10. If you work for pay, are you self-employed or do you have an employer?

1 Self-employed GO TO QUESTION C12

2 I have an employer GO TO QUESTION C12

C11. How long has it been since you have worked for pay?

1 1 to 6 months

2 7 to 12 months

3 1 to 2 years

4 More than 2 years but less than 5 years

5 5 years or more

6 I’ve never worked for pay or profit

C12. How important is it for you to work for financial reasons?

1 Not at all important

2 A little important

3 Somewhat important

4 Quite important

5 Very important

C13. How important is it for you to work for other non-financial reasons (for example, personal satisfaction, emotional wellbeing)?

1 Not at all important

2 A little important

3 Somewhat important

4 Quite important

5 Very important



D. Access to Cancer Treatment

The next few questions are about your access to cancer treatments.

D1. Indicate the type of breast cancer treatments or procedures you received? Please mark ALL that apply.

1 Chemotherapy

2 Radiation

3 Surgery—Lumpectomy

4 Surgery—Mastectomy

5 Surgery—Oophorectomy

6 Breast reconstruction

7 Lymph node removal

8 Hormonal Therapy [For example, Tamoxifen; Toremifene (Fareston®); Fulvestrant (Faslodex®); Leuprolide (Lupron ®); Goserelin (Zolade®); Triptorelin (Trelstar®); Aromatase inhibitors - Letrozole (Femara ®), Anastrozole (Arimidex ®) ]

9 Immunotherapy [For example, Trastuzumab (Herceptin), Pertuzumab (Perjeta®), Bevacizumab (Avastin®)]

10 Bone-directed Therapy [For example, Denosumab (Xgeva®, Prolia®), Pamidronate (Aredia®) and Zoledronic acid (Zometa)]

11 Physical Therapy

12 Complementary alternative medicine (CAM) treatments such as acupuncture, massage, nutrition counseling, etc.

13 Fertility preservation procedures

14 Genetic testing

15 Other (Specify): _________________________________

D2. At any time since you were first diagnosed with breast cancer, did you receive all of the medical care, tests, or treatments that your doctor believed was necessary?

1 Yes GO TO QUESTION D4

2 No


D3. Which of the following are reasons you did not receive all of the medical care, tests, or treatments you or a doctor believed you needed?

Please select YES or No for each item

1YES

2NO

a. Couldn’t afford it

b. Insurance company wouldn’t approve or pay for it

c. Doctor did not accept your insurance

d. Had transportation problems getting to the doctor’s office

e. Had problems other than transportation challenges getting to the doctor’s office

f. Couldn’t get time off from work

g. Didn’t know where to go to get care/treatment

h. Couldn’t get child care/adult care

i. Didn’t have time as care/test/treatment took too long

j. I was afraid of the treatment’s side effects

k. I wanted to preserve my fertility

l. Other reason (please describe):


D4. How much of a problem if any, was it to get the breast cancer care that you or a doctor believed was necessary (for example, reaction to the treatments or had transportation issues or financial problems)?

1 Not a problem

2 A small problem

3 A large problem

D5. How often did you have to wait longer than you wanted to get an appointment with your doctor?

1 Never

2 Sometimes

3 Usually

4 Always

D6. When you went to see your doctor for breast cancer care, how long did you typically wait in the office to see the doctor?

1 0-15 minutes

2 16-30 minutes

3 31-45 minutes

4 46-60 minutes

5 More than 60 minutes







D7. During the past 12 months, was hormonal therapy recommended to you to treat your breast cancer? Hormonal therapy includes the use of Tamoxifen; Toremifene (Fareston®); Fulvestrant (Faslodex®); Luteinizing hormone-releasing hormone (LHRH) agonists – Leuprolide (Lupron ®), Goserelin (Zolade®), Triptorelin (Trelstar®); Aromatase inhibitors - Letrozole (Femara ®); Anastrozole (Arimidex ®).

1 Yes

2 No GO TO SECTION E

D8. Did you begin hormonal therapy or did you receive LHRH agonists during the past 12 months?

1 Yes, hormonal therapy alone GO TO QUESTION D10

2 Yes, hormonal therapy with LHRH agonist GO TO QUESTION D10

3 Yes, LHRH agonist alone GO TO QUESTION D10

4 No



D9. Indicate the reason you decided not to initiate or continue with hormonal therapy or LHRH agonist as recommended.

Please select YES or No for each item

1YES

2NO

a. Copayment for the therapy was high

b. Insurance wouldn’t cover the therapy

c. Potential side effects or experienced side effects

d. Wanted to get pregnant

e. Other (please explain):





D10. If you began hormonal therapy or LHRH agonist during the past 12 months, did you do any of the following to save money related to your hormonal therapy?

Please select YES, NO, Refused, or Don’t Know for each item

1YES

2NO

3Refused

4Don’t Know

a. You skipped doses of hormonal therapy or LHRH agonist for treating your breast cancer to save money

b. You took fewer doses of your hormonal therapy for treating your breast cancer to save money

c. You delayed receiving hormonal therapy to treat your breast cancer to save money

d. You asked your doctor for a lower cost hormonal therapy to treat your breast cancer to save money

e. You bought breast cancer hormonal therapy from another country to save money

f. You used other therapies to avoid purchasing breast cancer hormonal therapy to save money



E. Quality and Coordination of Care and Treatment

For the next series of questions, we will be asking about the care you received from doctors, nurses, and other health care professionals involved in your breast cancer care and treatment.

E1. Which type of provider has been most involved in directing your care and treatment for your breast cancer in the past 12 months? Please select one only.

1 Primary care doctor or family doctor or nurse practitioner

2 Gynecologist

3 Medical oncologist or nurse oncologist

4 Breast surgeon

5 Other (please specify): ____________________________________

E2. In your opinion, how often did your doctor, the nurses, and other staff at your doctor’s office or clinic work well together in providing your medical care?

1 Never

2 Sometimes

3 Usually

4 Always

E3. On a scale of 0 to 10, where 0 means the worst doctor possible and 10 means the best doctor possible, how would you rate the provider most involved in directing your care for your breast cancer? Would you say…

0 0 = (Worst doctor possible)

1 1

2 2

3 3

4 4

5 5

6 6

7 7

8 8

9 9

10 10 = (Best doctor possible)

E4. Based on your interactions with your doctor, nurses, and other staff, how would you rate the quality of care you received from the office of the provider most involved in directing your care for your breast cancer?

1 Poor

2 Fair

3 Good

4 Very good

5 Excellent



E5. How often did the provider most involved in directing your care for your breast cancer explain things in a way you could understand?

1 Never

2 Sometimes

3 Usually

4 Always

E6. How often did the provider most involved in directing your care for your breast cancer spend enough time with you?

1 Never

2 Sometimes

3 Usually

4 Always

E7. How would you describe the knowledge of your relevant medical history by the provider most involved in directing your breast cancer treatment?

1 Poor

2 Fair

3 Good

4 Very good

5 Excellent


F. Disease-specific symptom index

The next set of questions is about symptoms you might be experiencing.

F1. Below is a list of statements that other people with your illness have said are important.

Please circle or mark one number per line to indicate your response as it applies to the past 7 days.

Not at
all

A little bit

Some-what

Quite
a bit

Very much

a. I have a lack of energy

0

1

2

3

4

b. I have pain

0

1

2

3

4

c. I have nausea

0

1

2

3

4

d. I have certain parts of my body where I experience pain

0

1

2

3

4

e. I have been short of breath

0

1

2

3

4

f. I worry that my condition will get worse

0

1

2

3

4

g. I am content with the quality of my life right now

0

1

2

3

4

h. Because of my physical condition, I have trouble meeting the needs of my family

0

1

2

3

4

The FACIT and all related works are owned and copyrighted by, and the intellectual property of David Cella, Ph.D. Permission for use of the FBSI questionnaire is obtained by contacting Dr. Cella at [email protected].





G. Cancer History

The next few questions are about the history of your cancer

G1. Please select one or more of the following types of breast cancers you have had.

1 Endocrine receptor (estrogen or progesterone receptor) positive

2 HER2 positive

3 Triple negative, not positive to receptors for estrogen, progesterone, or HER2

4 Triple positive, positive for estrogen receptors, progesterone receptors and HER2

5 Inflammatory breast cancer

6 Don’t know



G2. Select the one response that best describes your breast cancer stage at diagnosis.

1 Stage 0

2 Stage I

3 Stage II

4 Stage III

5 Stage IV

6 Don’t Know

G3. Have you experienced a recurrence or been diagnosed with another cancer since your initial breast cancer diagnosis?

1 Recurrence of breast cancer -- non-metastatic

2 Recurrence of breast cancer -- metastatic

3 Diagnosed with another type of cancer

4 Neither

G4. About how long ago did you receive your last cancer treatment (chemotherapy, radiation, surgery, hormonal therapy)?

1 I am still receiving treatment

2 Less than 1 year ago

3 1 year ago to less than 3 years ago

4 3 years ago to less than 5 years ago

5 5 years ago to less than 10 years ago

6 10 years ago to 20 years ago

7 More than 20 years ago

8 I have not been treated for cancer


G5. In addition to breast cancer, what other conditions have caused you problems?
Select ALL that apply

a. Vision/problem seeing

u. Circulation problems (including blood clots)

b. Hearing problem

v. Benign Tumors, Cysts

c. Arthritis/rheumatism

w. Fibromyalgia, lupus

d. Back or neck problem

x. Osteoporosis, tendinitis

e. Fracture, bone/joint injury

y. Epilepsy, seizures

f. Other injury

z. Multiple Sclerosis (MS), Muscular Dystrophy (MD)

g. Heart problem

aa. Polio (myelitis), paralysis, para/quadriplegia

h. Stroke problem

bb. Parkinson's disease, other tremors

i. Hypertension/high blood pressure

cc. Other nerve damage, including carpal tunnel syndrome

j. Diabetes

dd. Hernia

k. Lung/breathing problem (for example, asthma and emphysema)

ee. Ulcer

l. Cancers other than breast cancer

ff. Varicose veins, hemorrhoids

m. Birth defect

gg. Thyroid problems, Grave's disease, gout

n. Intellectual disability, also known as mental retardation

hh. Knee problems (not arthritis (c.), not joint injury (e.))

o. Other developmental problem (for example, cerebral palsy)

ii. Migraine headaches (not just headaches)

p. Depression/anxiety/emotional problem

jj. Other impairment/problem
(Specify one) __________________

q. Senility

kk. Other impairment/problem
(Specify one) __________________

r. Weight problem

ll. Other impairment/problem
(Specify one) __________________

s. Missing limbs (fingers, toes or digits), amputee

mm. None of the above

t. Kidney, bladder or renal problems

nn. Don't know/Not sure





H. Demographics

The last few questions are about you.

H1. What is your age?

1 18–24 years old

2 25–29 years old

3 30–34 years old

4 35–39 years old

5 40–44 years old

6 45–49 years old

7 50–54 years old

8 55–59 years old

9 60–64 years old

10 65 years old or older

H2. What was your age when you were initially diagnosed with breast cancer?

1 18–24 years old

2 25–29 years old

3 30–34 years old

4 35–39 years old

5 40–44 years old

6 45–49 years old

H3. What is the highest level of education you have completed?

1 Less than High School

2 High School Graduate or G.E.D.

3 Some College or Technical School

4 College Graduate (Bachelor's Degree)

5 Graduate Degree

H4. Are you of Hispanic or Latino origin or descent?

1 Yes, Hispanic or Latino

2 No, not Hispanic or Latino

H5. What is your race? Please mark ALL that apply.

1 White

2 Black or African American

3 Asian

4 Native Hawaiian or Other Pacific Islander

5 American Indian or Alaska Native




H6. When you were diagnosed with breast cancer, what was your marital status?
Please mark ONE.

1 Married

2 Widowed

3 Divorced

4 Separated

5 Never married

6 Living with your partner

7 Do not want to report

H7. What is your current marital status? Please mark ONE.

1 Married

2 Widowed

3 Divorced

4 Separated

5 Never married

6 Living with your partner

7 Do not want to report

H8. When you were initially diagnosed with breast cancer, how many children under 18 years old did you have living at your home?

1 None

2 1 – 3 children

3 4 – 6 children

4 7 – 9 children

5 10 or more children

H9. How would you describe yourself? Please mark ALL that apply.

1 I work full time or part time

2 I am unemployed

3 I am a homemaker

4 I am a student

5 I am retired

H10 When you were diagnosed with breast cancer, what was the total yearly income of your entire household, before tax deductions, from all sources? Please mark ONE.

1 less than $10,000

2 $10,000 - $19,999

3 $20,000 - $29,999

4 $30,000 - $39,999

5 $40,000 - $49,999

6 $50,000 - $59,999

7 $60,000 - $69,999

8 $70,000 - $79,999

9 $80,000 - $89,999

10 $90,000 or more

11 I don’t know

H11. When you were diagnosed with breast cancer, how many people were supported by the total income for your household including yourself? Please mark ONE.

1 1 (just you)

2 2

3 3

4 4 or more

H12. Did someone help you complete this survey?

1 Yes

2 No END SURVEY

H13. How did that person help you? Please mark ALL that apply.

1 Read the questions to me

2 Wrote down the answers I gave

3 Answered the questions for me

4 Translated the questions into my language

5 Helped in some other way


Thank you for completing the survey


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