appendix - susan g. komen minnesotafor+the+cure+2011+redesi… · minnesota affiliate of susan g....

Minnesota Affiliate of Susan G. Komen for the Cure® Wilder Research, March 2011 1

Appendix


A1. Clinics/hospitals reporting types of mammography services available

Mammogram type

Beltrami (n=4 sites

within county)

Clearwater (n=4 sites

within county)

Hubbard (n=2 sites

within county)

Kittson (n=1 sites

within county)

Lake of the

Woods (n=1 sites

within county)

Mahnomen (n=1 sites

within county)

Marshall (n=1 sites

within county)

Norman (n=2 sites

within county)

Pennington (n=1 sites

within county)

Polk (n=7 sites

within county)

Red Lake (n=2 sites

within county)

Roseau (n=2 sites

within county)

White Earth (n=1 sites within

county)

Any mammography 3 1 2 1 1 1 1 1 1 3 0 1 1

Screening 3 1 2 1 1 1 1 2 1 3 1 1

Diagnostic 3 0 2 1 1 1 1 1 1 3 1 0

Digital 0 0 2 1 1 1 1 2 0 3 0 1 0

Mobile only 0 1 0 1 0 1 1 2 1 2 0 0 0

A2. Clinics/hospitals reporting types of other diagnostic services

Financial sources

Beltrami (n=4 sites

within county)


within county)

Hubbard (n=2 sites

within county)

Kittson (n=1 sites

within county)

Lake of the

Woods (n=1 sites

within county)

Mahnomen (n=1 sites

within county)

Marshall (n=1 sites

within county)

Norman (n=2 sites

within county)


within county)

Polk (n=7 sites

within county)

Red Lake (n=2 sites

within county)

Roseau (n=2 sites

within county)

White Earth (n=1

sites within

county)

MRI 1 1 0 1 1 0 1 0 0 1 0 1 0

Sentinel node biopsy 1 0 0 0 0 0 0 0 1 2 0 0 0

Surgical biopsy 1 0 1 1 1 0 0 0 1 3 0 1 0

Ultrasound 3 1 1 1 1 0 1 0 1 3 0 1 1

Computer aided detection 2 0 1 0 0 0 1 0 0 2 0 1 0

Image guided breast biopsy 1 0 1 0 0 0 0 0 1 2 0 1 0


A3. Clinics/hospitals reporting education services

Education information

Beltrami (n=4 sites

within county)


within county)

Hubbard (n=2 sites

within county)

Kittson (n=1 sites

within county)

Lake of the

Woods (n=1 sites

within county)

Mahnomen (n=1 sites

within county)

Marshall (n=1 sites

within county)

Norman (n=2 sites

within county)


within county)

Polk (n=7 sites

within county)

Red Lake (n=2 sites

within county)

Roseau (n=2 sites

within county)

White Earth (n=1

sites within

county)

Breast self-exam training 3 4 1 0 0 0 1 1 0 3 1 2 0

Breast health information 3 3 1 1 1 0 1 1 0 2 2 2 1

Resource center/library 3 1 0 1 0 0 0 0 0 3 0 1 0

Community education 1 0 0 0 1 0 1 0 0 3 0 1 0

A4. Clinics/hospitals reporting treatment services

Treatment services

Beltrami (n=4 sites

within county)


within county)

Hubbard (n=2 sites

within county)

Kittson (n=1 sites

within county)

Lake of the

Woods (n=1 sites

within county)

Mahnomen (n=1 sites

within county)

Marshall (n=1 sites

within county)

Norman (n=2 sites

within county)


within county)

Polk (n=7 sites

within county)

Red Lake (n=2 sites

within county)

Roseau (n=2 sites

within county)

White Earth

(n=1 sites within

county)

Oncology 2 0 1 0 0 0 0 1 1 2 0 1 0

Chemotherapy 1 0 1 0 0 0 0 1 1 2 0 1 0

Radiation oncology 1 0 1 0 0 0 0 1 0 0 0 0 0

Surgery 1 0 2 0 0 0 0 1 1 2 0 1 0

Plastic surgery 0 0 0 0 0 0 0 1 0 1 0 0 0

Clinical trials 0 0 0 0 0 0 0 0 1 1 0 0 0


A5. Clinics/hospitals reporting other services available

Other services

Beltrami (n=4 sites

within county)


within county)

Hubbard (n=2 sites

within county)

Kittson (n=1 sites

within county)

Lake of the

Woods (n=1 sites

within county)

Mahnomen (n=1 sites

within county)

Marshall (n=1 sites

within county)

Norman (n=2 sites

within county)


within county)

Polk (n=7 sites

within county)

Red Lake (n=2 sites

within county)

Roseau (n=2 sites

within county)

White Earth

(n=1 sites within

county)

Child care 0 0 0 0 0 0 0 0 0 1 0 0 0

Complementary or alternative therapies 0 0 0 0 0 0 0 0 0 1 0 0 0

Nutritional services 1 1 1 0 0 1 1 0 1 5 0 1 1

Physical therapy 3 1 1 1 1 1 1 1 0 4 2 1 1

Transportation for patients for screening 2 1 1 1 0 0 1 0 0 2 0 0 1

Transportation for patients for treatment 2 0 0 1 0 0 0 0 0 3 0 0 1

Patient advocate for financial assistance 4 2 1 1 0 1 1 0 1 4 0 0 1

Nurses or social workers who help a patient walk through screening, diagnosis, treatment, etc 2 1 1 0 0 1 0 2 0 4 0 0 0

Community health workers who support patients with screening, diagnosis, treatment, etc 2 0 1 0 0 1 1 0 1 2 0 0 0

Other supports for patients navigating screening, diagnosis, treatment 3 0 0 0 0 0 0 0 0 1 1 0 0


A6. Clinics/hospitals who accept following sources of payment

Financial sources

Beltrami (n=4 sites

within county)


within county)

Hubbard (n=2 sites

within county)

Kittson (n=1 sites

within county)

Lake of the

Woods (n=1 sites

within county)

Mahnomen (n=1 sites

within county)

Marshall (n=1 sites

within county)

Norman (n=2 sites

within county)


within county)

Polk (n=7 sites

within county)

Red Lake (n=2 sites

within county)

Roseau (n=2 sites

within county)

White Earth (n=1

sites within

county)

Medicaid 3 1 1 1 1 1 1 1 1 6 2 2 1

Medicare 3 4 2 2 1 1 1 1 1 6 2 2 1

Private insurance 3 4 2 2 1 1 1 2 1 7 2 2 1

Sliding scale 2 3 1 0 0 0 1 0 0 1 0 0 0

Charity care 3 3 1 1 1 1 1 1 0 3 0 1 0


A7. Clinics/hospitals reporting counseling and/or support group services available

Services for the following populations

Beltrami (n=4 sites

within county)


within county)

Hubbard (n=2 sites

within county)

Kittson (n=1 sites

within county)

Lake of the

Woods (n=1 sites

within county)

Mahnomen (n=1 sites

within county)

Marshall (n=1 sites

within county)

Norman (n=2 sites

within county)


within county)

Polk (n=7 sites

within county)

Red Lake (n=2 sites

within county)

Roseau (n=2 sites

within county)

White Earth

(n=1 sites within

county)

Stress management 2 1

Women with recurrent breast cancer 2 1

Young women 1 1

Male peer group 1 1

Family caregiver 1

Peer support 2

Native American women 1

Metastatic cancer 1

Education 1 1

Child of parent with breast cancer 1


A8. Services available through Minnesota Cancer Resource Registry

Services for the following populations Beltrami Clearwater Hubbard Kittson

Lake of the

Woods Mahnomen Marshall Norman Pennington Polk Red Lake Roseau Beltrami

Support groups and counseling 1 1 1

Caregiver Support 3 1 1 1 2 2

Grief Support 1 1 1 1

Hospice and palliative care 1 1 1 1 1 1 1 1 1 1

Symptom management

End of Life

Financial assistance 2 1 1 1 1 1 1 1 1 2 1 1 2

Food and nutrition 1 1 1 1 1 1 1 1 1 2 1 1 1

Legal assistance 1* 1 1 1 1 1 1 1 1 1 1 1 1*

Medical equipment 1 1 1

Medication / Medical assistance 1

Physical appearance 1 1 1 1 1 1 1 1 1 1 1

Transportation 1

*Notes: Legal Services for Northwest Minnesota, located in Beltrami County, provides legal services to each county in the target area.


Key informant questions - Professionals

Hi, my name is ________ and I’m calling from Wilder Research, part of the Wilder Foundation in Saint Paul. We are working with the Minnesota Affiliate of Susan G. Komen for the Cure, conducting an assessment of the breast health and breast cancer needs and resources in several communities in Minnesota. We are calling specifically about issues in _____ county. Would you be willing to complete a telephone interview about the awareness opportunities and services and supports available in your community? The interview will likely take 20 minutes.

1. This project is focused on gathering information about specific communities in Minnesota, including ___________ county. Most of the questions I’ll be asking will refer to your ‘community’. How would you define your ‘community’? (PROBE: geographically, culturally)

The first few questions ask about raising awareness of breast health issues, specifically breast cancer screening.

1. We are interested in gathering information about breast health activities and resources including awareness and education, prevention, treatment, and support. What is your role in providing or coordinating these activities and resources? How long have you worked in this capacity?

2. IF APPROPRIATE: Does your agency/program currently partner or collaborate with other agencies or programs in

your community around breast health issues? If yes, please describe.

3. IF APPROPRIATE: Does your agency/do healthcare agencies/programs within your area actively recruit bilingual/bicultural staff?

4. In your experience, is breast health something that is talked about in your community? How aware is your community about breast health issues? (PROBE: Screening (mammograms), treatment, prevention)

5. Who in your community is NOT talking about breast health issues? Which groups are least likely to receive screening/detection? (PROBE: cultural groups, geographic groups, low income)

6. Every person, family, and community experience illness in a unique way. Understanding how people experience

an illness can help improve services to help them. Are there any cultural or religious groups within your community who have different interpretations of cancer screening and treatment? If so, who are these groups? What are their interpretations?

7. What other organizations or agencies in your community come to mind when you think about breast cancer awareness or education? How effective are these organizations or agencies in informing key risk groups in your community? (PROBE: women, older women, women of color, geographically isolated) What types of activities take place with these groups?

8. What have been effective means of raising awareness and sharing information about breast health information

(or other health issues if nothing in place for breast health) in your community? What has NOT been effective? Now I’d like to ask some questions about the availability and quality of local health care providers and health systems.

9. What clinics or hospitals come to mind when you think about breast cancer detection and treatment? Do these

clinics and/or hospitals meet the needs of members of your community? How or how not?

10. Do any local health care providers or health systems participate in any “medical home” initiatives or models? Medical homes can include care coordination, care guide, community health workers, health educators, care navigators, etc.


11. How available is specialty healthcare in your community? To what extent are specialists available locally? How

do members of your community access specialty healthcare (specific to cancer treatment)?

12. How satisfied are members of your community with local health care providers and health systems? Have there been changes to the types of health care services available in your community in recent years? If so, what have these changes been? What has been the impact?

13. To the best of your knowledge, are there any programs or supports in place that help women navigate breast

cancer screening? Programs are sometimes call “patient navigation programs”– Often patient navigators are Registered Nurses or hospital social workers, or programs may support community health workers who work with women to get them into screening.

The next questions are about challenges that members of your community may encounter in receiving breast cancer screening.

14. Do people in your community perceive any barriers to breast cancer screening and detection services? (PROBE:

racial/ethnic groups, the disabled, those without transportation, the uninsured/underinsured, religious groups, language barriers). What are the challenges experienced by these groups? (examples: fear of doctors, fear of results of screening, not a priority/lack of personal threat, stigma, cannot afford childcare, transportation, lost time at work, don’t know about resources, etc )

15. How do women in your community pay for health care services? How do most women in your community pay for breast cancer screening?

16. Are you aware of sliding fee scale clinics or other programs that provide lower cost screening for women who meet income qualifications?

17. How effective are financial assistance programs in your community in helping women access breast health services? [PROBE: Screening, diagnosis, treatment, aftercare]

The last few questions ask about your suggestions for improving access to breast cancer screening in your community.

18. If you had a “magic wand” and unlimited funds, what do you believe would be the most effective means of

increasing rates of breast cancer screening for women in your community?

19. Are there any other initiatives or efforts in your community that you’d like to share?

20. To your knowledge, have any organizations or agencies in your community ever partnered with the Susan G. Komen for the Cure? Any other cancer specific organizations or initiatives?

21. Is there anyone else in your county or community that you might suggest we speak with for this phase of our assessment?


Key informant questions - Survivors

Hi, my name is ________ and I’m calling from Wilder Research, part of the Wilder Foundation in Saint Paul. We are working with the Minnesota Affiliate of Susan G. Komen for the Cure, conducting an assessment of the breast health and breast cancer needs and resources in several communities in Minnesota. We are calling specifically about issues in _____ county. Would you be willing to complete a telephone interview about the awareness opportunities and services and supports available in your community? The interview will likely take 20 minutes.

2. XX from XX shared your contact information with me. I understand that you have had experience with breast cancer. Can you tell me a bit about your experience? [PROBE: When was your cancer diagnosed? Where were you living at the time of your diagnosis? Where did you receive treatment?}

The first few questions ask about raising awareness of breast health issues, specifically breast cancer screening.

22. From your perspective, is breast health something that is talked about in your community? How aware is your community about breast health issues? [PROBE: Do people talk openly about breast cancer? Are people knowledgeable? Do they take personal responsibility for screening and treatment? Or do they talk about it, but don’t take personal action ] (PROBE: Screening (mammograms), treatment, prevention)

23. Who in your community is NOT talking about breast health issues? Which groups are most likely to not receive screening/detection? (PROBE: cultural groups, geographic groups, low income)

24. What organizations or agencies in your community come to mind when you think about breast cancer

awareness or education? How effective are these organizations or agencies in informing key risk groups in your community? (PROBE: women, older women, women of color, geographically isolated) What types of activities take place with these groups?

Now I’d like to ask some questions about the availability and quality of local health care providers and health systems.

25. What clinics or hospitals come to mind when you think about breast cancer detection and treatment? Did these

clinics and/or hospitals meet your needs while you were receiving treatment? How or how not?

26. How available is specialty healthcare in your community? To what extent did you need to travel to receive specialty services?

27. How satisfied were you with the care you received during your experience with breast cancer? Why or why not?

28. Have there been changes to the types of health care services available in your community in recent years? If so,

what have these changes been? What has been the impact? [PROBE: Have new doctors arrived or left, new clinics, new or fewer services, etc]

29. Did you receive assistance from any programs or supports to help women navigate breast cancer screening and

treatment? Programs are sometimes call “patient navigation programs”– Often patient navigators are Registered Nurses or hospital social workers, or programs may support community health workers who work with women to get them into screening.

The next questions are about challenges that members of your community may encounter in receiving breast cancer screening.


30. Did you experience any barriers to breast cancer screening or detection services? What challenges did you experience? (examples: fear of doctors, fear of results of screening, not a priority/lack of personal threat, stigma, cannot afford childcare, transportation, lost time at work, don’t know about resources, etc )

31. How effective are financial assistance programs in your community in helping women access breast health services? [PROBE: Screening, diagnosis, treatment, aftercare]

The last few questions ask about your suggestions for improving access to breast cancer screening in your community.

32. If you had a “magic wand” and unlimited funds, what do you believe would be the most effective means of

increasing rates of breast cancer screening for women in your community?

33. Are there any other initiatives or efforts in your community that you’d like to share?

34. Is there anyone else in your county or community that you might suggest we speak with for this phase of the project?


Community Profile

Susan G. Komen for the Cure - Minnesota Affiliate Community Profile

Hi, I’m from the Wilder Foundation in Saint Paul, calling on behalf of the Minnesota Affiliate of Susan G. Komen for the Cure. We are currently conducting an assessment of the breast health and breast cancer needs and resources in Minnesota. I have a few questions about your program’s services, the populations you serve, and available supports for those diagnosed with cancer. Would you be willing to answer some questions about the breast cancer resources available through your program? [If NO, ‘Who would be someone else I could speak with?’] NOTE: often looking for a nurse manager, clinic manager, clinic supervisor By completing this short interview about your organization’s breast health and breast cancer programs, you can help us understand the currently available breast cancer education, screening, diagnosis, treatment and support programs in our service area. This information will be instrumental in guiding our Affiliate’s activities – such as grant-making, fundraising and educational outreach – so as not to duplicate programs already in place and focus our efforts on addressing any unmet breast cancer needs. Are you willing to answer some questions about your program? The interview will take approximately 20 minutes. Is now a good time? (IF NO: schedule a better time) Services offered First I’d like to ask you about the services provided by your program. 1. Does your program offer mammography services?

1 Yes

2 No (Skip to Q5)

2. If yes, which of the following do you offer?

Mammography Yes No Refused Don’t Know

a. Screening mammography 1

2 7

8

b. Diagnostic mammography 1

2 7

8

c. Digital mammography 1

2 7

8

d. Mobile Mammography 1

2 7

8

3. How many mammograms (all types) does your clinic complete in one week? __________ number


4. On what days and what times are mammogram services available?

SUNDAY From: THURSDAY From:

To: To:

MONDAY From: FRIDAY From:

To: To:

TUESDAY From: SATURDAY From:

To: To:

WEDNESDAY From:

To:

5. Do you refer women to other clinics or hospitals for mammogram screening?

1 Yes

2 No

6. If yes, where do you refer? _____________________________________________ 7. How far must women travel to this/those clinics/hospitals? ____________________________________ 8. Does your program offer other breast cancer screening services?

1 Yes

2 No (SKIP TO QUESTION 10)

9. If yes, what of the following does your program offer?

Other screening Yes No Refused Don’t Know

a. MRI (Magnetic Resonance Imaging) 1

2 7

8

b. Sentinel Node Biopsy 1

2 7

8

c. Surgical biopsy 1

2 7

8

d. Ultrasound 1

2 7

8

e. Computer Aided Detection (CAD) 1

2 7

8

f. Image guided breast biopsy (stereotactic, ultrasounds guided)

1 2

7 8

g. Other (Specify: ______________________________) 1 2

7 8

10. Does your program offer any treatment services for people diagnosed with breast cancer?

1 Yes



11. If yes, which of the following treatment options are available through your program?

Treatment Yes No Refused Don’t Know

a. Oncology 1

2 7

8

b. Chemotherapy 1

2 7

8

c. Radiation Oncology 1

2 7

8

d. Surgery 1

2 7

8

e. Plastic Surgery 1

2 7

8

f. Clinical trials 1

2 7

8

g. Other (Specify: ______________________________) 1 2

7 8

12. Does your program offer any educational services?

1 Yes


13. If yes, which of the following does your program offer?

Education information Yes No Refused Don’t Know

a. Breast self-exam training 1

2 7

8

b. Breast health information 1

2 7

8

c. Resource center/library 1

2 7

8

d. Community education 1

2 7

8

e. Other (Specify: ______________________________) 1 2

7 8


14. Does your program offer any of the following services for breast cancer patients?

Other Services Yes No Refused Don’t Know

a. Child care 1

2 7

8

b. Complementary or alternative therapies 1

2 7

8

c. Nutritional services 1

2 7

8

d. Physical therapy 1

2 7

8

e. Transportation for patients for screening 1

2 7

8

f. Transportation for patients for treatment

g. Patient advocate for financial assistance 1

2 7

8

h. Nurses or social workers who help a patient walk through screening, diagnosis, treatment, etc

1 2

7 8

i. Community health workers who support patients with screening, diagnosis, treatment, etc

1 2

7 8

j. Other supports for patients navigating screening, diagnosis, treatment

Please describe:

1

2 7

8

k. Other (Specify: ______________________________) 1 2

7 8

Program information 15. Is your organization for profit or non-profit?

1 For-profit

2 Non-profit

16. Is your organization a SAGE provider? (Minnesota Cancer Screening Program)

1 Yes

2 No


17. Which of the following payment sources are accepted through your program?

Financial information Yes No Refused Don’t Know

a. State-funded Insurance (Medicaid) 1

2 7

8

b. Medicare 1

2 7

8

c. Private insurance

d. Sliding Scale 1

2 7

8

e. Charity care (free/no cost mammograms (NOT SAGE) 1 2

7 8

f. Other (Specify: ______________________________) 1 2

7 8

Populations Served Now I’d like to ask about the populations you serve. 18. Is the mission of your organization to serve a specific population? [PROBE: Specific racial/ethnic group? Specific age group? Individuals with specific disabilities?]

___________________________________________________________________________________

___________________________________________________________________________________ 19. Does your program serve individuals who are non-English speakers?

1 Yes


20. Does any of the staff at your program speak languages other than English? If yes, what languages? (Do not read list. Ask open-ended. Code based on response)

Language Yes No Refused Don’t Know

a. English only 1 2

7 8

b. American Sign Language (ASL) 1

2 7

8

c. Spanish 1

2 7

8

d. Hmong 1

2 7

8

e. Vietnamese 1

2 7

8

f. Russian 1

2 7

8

g. Arabic 1

2 7

8

h. Somali 1

2 7

8

i. Other (Specify: ___________________) 1 2

7 8


21. Are there interpretations services available for patients? If yes, what languages? (Do not read list. Ask open-ended. Code based on response)

Language Yes In

person Telephone

only No Refused Don’t Know

a. English only 1

2 3

4 7

8


2 3

4 7

8

c. Spanish 1

2 3

4 7

8

d. Hmong 1

2 3

4 7

8

e. Vietnamese 1

2 3

4 7

8

f. Russian 1

2 3

4 7

8

g. Arabic 1

2 3

4 7

8

h. Somali 1

2 3

4 7

8

i. Other (Specify: ______________________________)

1 2

3 4

7 8

22. Are publications and materials available in languages other than English? If yes, which ones? (Do not read list. Ask open-ended. Code based on response)

Language Yes No Refused Don’t Know

a. English only 1

2 7

8


2 7

8

c. Spanish 1

2 7

8

d. Hmong 1

2 7

8

e. Vietnamese 1

2 7

8

f. Russian 1

2 7

8

g. Arabic 1

2 7

8

h. Somali 1

2 7

8

i. Other (Specify: ______________________________) 1 2

7 8


Support Groups 23. Does your program offer any counseling services or support groups?

1 Yes


24. If yes, what of the following does your program offer?

Yes No Refused Don’t Know

a. Stress management and coping skills 1

2 7

8

b. Genetic risk counseling 1

2 7

8

c. Women with recurrent breast cancer counseling or support group

1 2

7 8

d. Young women counseling or support group 1

2 7

8

e. Peer support for men 1

2 7

8

f. Family/caregiver support services 1

2 7

8

g. Peer support groups 1

2 7

8

h. Lesbians and women who partner with women support group or counseling services

1 2

7 8

i. African American women counseling or support group 1

2 7

8

j. Asian women counseling or support group 1

2 7

8

k. Hispanic/Latina women counseling or support group 1

2 7

8

l. Native American women counseling or support group 1

2 7

8

m. Metastatic Support Group 1

2 7

8

n. Education support group 1

2 7

8

o. Lymphedema support group 1

2 7

8

p. Online support group 1

2 7

8

q. Children of a parent with breast cancer support group or counseling services

1 2

7 8

r. Other (Specify: ______________________________) 1 2

7 8

25. Another part of this project involves interviewing members of your community who are involved with

breast health and breast cancer issues, as well as needs and barriers for patients within your community. Do you have anyone that you might suggest we speak with for this phase of the project?

1 Yes

2 No

Name : ________________________________________________________________________________

Title :__________________________________________________________________________________

Name of employer/institution: _____________________________________________________

Phone : _____________________________________________________

Email :______________________________________________________

appendix - susan g. komen minnesotafor+the+cure+2011+redesi… · minnesota affiliate of susan g....

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