Melanoma Research Foundation Educational Needs Assessment

Patient and Caregiver Survey

The Melanoma Research Foundation (MRF) is conducting a study to learn more about educational resources available to those who have been diagnosed with melanoma and their caregivers and providers. Thank you for being willing to share your thoughts. The survey will take approximately 10 minutes and your comments will be kept confidential.

The survey will close on Friday, June 8, 2018.

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* 1. What state do you live in?

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* 2. What is your gender?

Male

Female

Other (please specify)

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* 3. Please indicate which of the following age groups you are in

Under 25

25-44

45-64

65 and over

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* 4. What is the highest grade in school you completed?

Less than high school

Graduated high school

Some college or vocational training

Graduated college (4-year Bachelor Degree)

Completed Graduate or Professional school (Masters, PhD, MD/DO, JD)

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* 5. What race/ethnicity best describes you?

White or Caucasian

Black or African American

Hispanic or Latino

Asian or Pacific Islander

American Indian or Alaska Native

Multiple ethnicity

Other (please specify)

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* 6. Please describe how you have experienced melanoma. As a:
(Check all that apply)

Patient/Survivor

Caregiver or parent of a melanoma patient

Healthcare Provider

Other (please specify)

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* 7. Which type(s) of melanoma were you or your loved one diagnosed with?
(Check all that apply)

Cutaneous

Ocular

Mucosal

Pediatric

Other (please specify)

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* 8. What is your stage?

In-situ

Stage I

Stage II

Stage III

Stage IV

NED

Primary OM

Metastatic OM

Stage Unknown

Other (please specify)

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* 9. When were you or your family member first diagnosed with melanoma?

Within the last year

1-2 years ago

2-5 years ago

More than 5 years ago

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* 10. Do you or did you typically receive treatment in your local community?

Yes

Other (please specify)

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* 11. How far did you travel for treatment?

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* 12. Where do you usually go for health information? (Check all that apply)

Google

WebMD

Centers for Disease Control and Prevention (CDC)

Mayo Clinic (website, App)

Social Media (Facebook, Twitter, Instagram, YouTube, etc.)

Disease-specific websites

Primary Care Provider (MD, DO, NP)

Other (please specify)

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* 13. When seeking health information, what format do you prefer? (Check all that apply)

Website page

PDF Download

Interactive website and/or multimedia

Brochure at your provider's office

In-person from Primary Care Provider (MD, DO, NP, RN)

Webinars

In-person symposium or health fair

Other (please specify)

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* 14. What is your primary source of melanoma information?

The MRF Website

The Melanoma Patients Information Page (community forum)

Local melanoma support group

MRF's Buddy Program

Your treatment provider

Melanoma Research Alliance

AIM at Melanoma

Melanoma International Foundation

MRF Patient Symposium (CURE OM, Pediatric, etc.)

Other (please specify)

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* 15. What information would be or would have been most helpful? (Check all that apply)

General melanoma information

Melanoma prevention

Diagnosing melanoma

Stages of melanoma

Types of melanoma

Melanoma treatment

Clinical Trial information

Find a Provider

Patient forum and support groups

Caregiver support information

Melanoma research studies

How and/or why did I get melanoma

Survival rates

Other (please specify)

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* 16. What types of information were you provided with upon your (or your loved one's) diagnosis? (Check all that apply)

Pamphlet on melanoma (General information)

Treatment options guide

Melanoma resources

Clinical trials

Melanoma specialists in your area

Other (please specify)

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* 17. Where did the melanoma information come from?

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* 18. Ideally, when would you want to receive health information about melanoma?

Upon diagnosis

Upon visiting a melanoma specialist

After your appointment

Prior to your appointment

During treatment

During routine check-ups

Other (please specify)

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* 19. What treatment information and options were discussed with you (or loved one) upon diagnosis? (Check all that apply)

Surgery

Radiation or Radiotherapy

Adjuvant Therapies

Viral Oncolytic Therapies

Imlygic (TVEC)

Immunotherapies

Yervoy (Itilimu)

Opdivo (Nivolumab)

Keytruda (Pembrolizumab)

Interleukin-2

Interferon

Targeted Therapies

Zelboraf+Cotellic (Cobimetinib)

Trafinir+Mekinst (Dabrafenib+Trametinib)

Chemotherapy

Clinical Trials

Other (please specify)

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* 20. Please rate your understanding of the following melanoma treatment options.

	Do not understand well	Understand somewhat	Understand well	I'm not familiar with this treatment
Immunotherapies	Immunotherapies Do not understand well	Immunotherapies Understand somewhat	Immunotherapies Understand well	Immunotherapies I'm not familiar with this treatment
Viral Oncolytic Therapies	Viral Oncolytic Therapies Do not understand well	Viral Oncolytic Therapies Understand somewhat	Viral Oncolytic Therapies Understand well	Viral Oncolytic Therapies I'm not familiar with this treatment
Targeted Therapies	Targeted Therapies Do not understand well	Targeted Therapies Understand somewhat	Targeted Therapies Understand well	Targeted Therapies I'm not familiar with this treatment
Adjuvant Therapies	Adjuvant Therapies Do not understand well	Adjuvant Therapies Understand somewhat	Adjuvant Therapies Understand well	Adjuvant Therapies I'm not familiar with this treatment

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* 21. Did your treatment team discuss the importance of reporting side effects immediately?

Yes

I don't know

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* 22. Do you feel comfortable calling your treatment team, anytime, to report a potential side effect?

Yes

Comments:

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* 23. When did your provider discuss clinical trial options with you?

Never

At your first appointment after diagnosis

At a follow-up appointment after diagnosis

During treatment

Other (please specify)

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* 24. Did you choose to participate in a clinical trial?

Yes

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* 25. Why or why not?

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* 26. Have you had biomarker testing?

Yes

I don't know

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* 27. What biomarkers have you been tested for? (Check all that apply)

Broad profile with many biomarkers

BRAF

KIT

MEK

NRAS

Microsatellite instability

Tumor mutational burden

I don't know

I'd rather not say

Other (please specify)

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* 28. Have you visited the Melanoma Reseach Foundation (MRF) website for health information?

Yes

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* 1. What state do you live in?

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* 2. What is your gender?

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* 3. Please indicate which of the following age groups you are in

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* 4. What is the highest grade in school you completed?

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* 5. What race/ethnicity best describes you?

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* 6. Please describe how you have experienced melanoma. As a: (Check all that apply)

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* 7. Which type(s) of melanoma were you or your loved one diagnosed with?(Check all that apply)

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* 8. What is your stage?

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* 9. When were you or your family member first diagnosed with melanoma?

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* 10. Do you or did you typically receive treatment in your local community?

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* 11. How far did you travel for treatment?

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* 12. Where do you usually go for health information? (Check all that apply)

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* 13. When seeking health information, what format do you prefer? (Check all that apply)

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* 14. What is your primary source of melanoma information?

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* 15. What information would be or would have been most helpful? (Check all that apply)

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* 16. What types of information were you provided with upon your (or your loved one's) diagnosis? (Check all that apply)

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* 17. Where did the melanoma information come from?

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* 18. Ideally, when would you want to receive health information about melanoma?

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* 19. What treatment information and options were discussed with you (or loved one) upon diagnosis? (Check all that apply)

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* 20. Please rate your understanding of the following melanoma treatment options.

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* 21. Did your treatment team discuss the importance of reporting side effects immediately?

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* 22. Do you feel comfortable calling your treatment team, anytime, to report a potential side effect?

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* 23. When did your provider discuss clinical trial options with you?

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* 24. Did you choose to participate in a clinical trial?

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* 25. Why or why not?

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* 26. Have you had biomarker testing?

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* 27. What biomarkers have you been tested for? (Check all that apply)

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* 28. Have you visited the Melanoma Reseach Foundation (MRF) website for health information?

* 6. Please describe how you have experienced melanoma. As a:
(Check all that apply)

* 7. Which type(s) of melanoma were you or your loved one diagnosed with?
(Check all that apply)