To help prioritize patient needs at the first meeting of the national Ocular Melanoma (OM) Physician Task Force in May 2021, we would like to gather information from the patient/caregiver perspective about the current OM care experience across Canada.

Please complete the following survey and encourage any other OM patients you know to complete it too.  A report will be published on the survey results, to be shared on the Ocumel Canada website and with OM treating physicians in every province. If you wish to be contacted for updates, you will be able to provide your email address in the survey below.

This survey will be distributed across Canada, in English and French, through various social media methods and partner advocacy organizations to reach as many patients as possible that have ever been diagnosed with ocular melanoma (OM), primary and/or metastatic.  Recorded through the anonymous SurveyMonkey platform, the target outcomes of this survey include:
·   Identify priorities for action to improve care and support of ocular melanoma across Canada
·   Build community for support of patients touched by ocular melanoma

This survey should take 8-12 minutes, and can be filled out by patients or their caregiver. Thank you for participating in this survey; if you have any questions, concerns, or additional information you wish to share, please contact ocumelcanada@saveyourskin.ca or visit our website to read more about what we are working on to support patients touched by ocular melanoma.

Ocumel Canada is dedicated to providing support, education and research for OM patients in Canada and advocating for consistent, best practice care. Sincere thanks. 
Contact Us:
Email: ocumelcanada@saveyourskin.ca
Phone: 1-800-460-5832 
Facebook:  https://www.facebook.com/groups/OcularMelanomaConnect/

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* 1. In which province do you live?

About Your Diagnosis

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* 2. Were you diagnosed with:

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* 3. In what year were you first diagnosed, whether primary or metastatic?

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* 4. For confirmation of ocular melanoma metastasis, have you had a biopsy?

About Genetic Testing

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* 5. Did you have genetic testing to establish metastatic risk?

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* 6. If you have had genetic testing, which test was it?

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* 7. If you have had genetic testing, did you have to pay for it out-of-pocket?

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* 8. If you did not have genetic testing, do you wish you had?

About OM Treatment

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* 9. Have you ever had treatment for ocular melanoma? (check all that apply)

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* 10. When was your most recent treatment for ocular melanoma? (month/year)

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* 11. Do you live in the same province as when you were diagnosed with ocular melanoma?

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* 12. If you received treatment for ocular melanoma, was it in the same province as the one where you lived at the time of treatment?

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* 13. Has your medical team ever referred you to an oncologist in another province?

Sharing what you feel Canadian OM Health Care Providers should prioritize

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* 14. What is your priority in OM care?

  very important important somewhat important not important
treatment for primary disease
adjuvant treatment for high-risk patients
treatment for metastatic disease
scanning and follow-up protocols
resources for living with OM diagnosis
access to care centre close to home
access to care centre outside of resident province if necessary

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* 15. Is there anything you feel could be improved in your OM care?

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* 16. Do you have a question or concern about your OM care that you need help addressing?

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* 17. With respect to your OM care and medical team, do you feel you need assistance with any of the following?

  very much a lot somewhat not at all N/A
medical information and support
emotional support
OM research updates
travel costs
Service delivery

Canada has 3 centres that provide primary and metastatic OM care: Montreal, Toronto and Edmonton. Vancouver has a primary care centre.

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* 18. If you could choose, which of the following options would you be most comfortable with?  (for both primary and metastatic treatment and monitoring)

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* 19. Do you feel that provincial medical plans should cover essential travel for OM patients?

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* 20. If possible, please share 1-2 things that were the most challenging about your diagnosis/treatment/OM care experience:

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* 21. Is there anything else you wish to communicate regarding your OM care at this time?

During the COVID-19 pandemic

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* 22. With respect to your OM care experience since the beginning of the COVID-19 pandemic, please consider the following:

  yes no no opinion N/A
has your treatment been affected?
have your scanning or follow-ups been affected?
has your disease worsened during the pandemic?
has the pandemic increased your general stress levels?
has the pandemic increased your stress around OM?
have you been vaccinated?
will you choose to be vaccinated?
Thank you for your time!

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* 23. If you wish to enter your email or telephone information below, we would be happy to contact you with this survey report and future initiatives. (if you wish to remain anonymous but still wish to get updates, please feel free to email us or visit our website)

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