Patient Navigation Service Outcomes Survey

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Thank you for submitting your response to the Patient Navigation Service Satisfaction Survey. To help us learn more about how our programs and services impact the lives of our community members, we would appreciate if you would also take a few minutes to answer the questions below.

This survey is also anonymous unless you choose to provide us with your name.

Which of the following was the primary reason you decided to contact the Chordoma Foundation Patient Navigation Service?

Please tell us more about what led you to contact us.

Please tell us more about your needs when you contacted us.

What type of chordoma were you or your loved one diagnosed with?

Did your CF Patient Navigator provide you with information on the different types of chordoma?

Did you or your loved one receive treatment after contacting the CF Patient Navigation Service?

If no, why not?

I did not need treatment when I contacted the CF Patient Navigation ServiceMy doctor decided to monitor my tumorI could not find anyone to treat meOther

What treatment(s)? (select all that apply)

SurgeryRadiationSystemic therapyOther

Please tell us more about the treatment you received.

What was the outcome of surgery?

All visible tumor was removedThere was some tumor remaining after surgeryI am unsure

What type of radiation did you or your loved one have?

Proton Beam Therapy (PBT)Photon radiation (e.g., IMRT)Stereotactic radiosurgery (SRS) or stereotactic body radiation therapy (SBRT)Carbon ion therapyI am unsure

Did you or your loved one enroll in a clinical trial or receive an off-label systemic therapy?

Clinical trialOff-label therapyI am unsure

In which trial did you or your loved one enroll?

You can provide the name of the trial, the name of the drug(s) being studied in the trial, etc.

Did your CF Patient Navigator provide you with information on clinical trials?

Which off-label therapy did you or your loved one receive?

Were you or your loved one treated by doctors in the Chordoma Foundation Doctor Directory?

What were the reasons you were not treated by doctors listed in the Doctor Directory? (Please select all that apply.)

I could not travel to those doctors due to financial or physical limitationsI did not want to travel away from my support network for treatmentMy insurance provider or health system would not pay for treatment from those doctorsI was treated by a doctor with chordoma experience who is not listed in the Doctor DirectoryI was not able to have a remote consultation with any of the doctors from the Directory while deciding on treatmentI chose another doctor because I preferred his or her treatment plan/facility/location

Please consider sharing the doctor's name and institution with us so we can contact them to be listed in the Doctor Directory.

Was treatment recommended for you that you were not able to access?

Please tell us more about the treatment you were not able to access.

What prevented you from accessing the treatment?

e.g., insurance or health system denials, cost of treatment, doctors were too far away

Please tell us more about the palliative or supportive care received.

Did your CF Patient Navigator connect you with others in the Chordoma Community for peer support? (Please select all that apply.)

Yes, through Chordoma ConnectionsYes, I was matched with a CF Peer GuideYes, I was connected with another patient or caregiver informallyNo, my CF Patient Navigator did not connect me with others

Was your Peer Guide helpful to you?

Yes, very helpfulSomewhat helpful, but I did not get what I needed from my GuideNo, not helpful

How could your Peer Guide have been more helpful to you?

Did you connect with others in the chordoma community in any other way? (Please select all that apply.)

Chordoma Survivors Facebook groupOther chordoma Facebook groupsI met other patients and caregivers where I was being treatedAt a Chordoma Community ConferenceMy doctor connected me with othersI did not connect with anyone from the chordoma community

Did you have a care coordinator or patient navigator at the medical center where you were treated?

What did you find most helpful about working with the care coordinator or patient navigator at your medical institution?

Please tell us anything else you'd like us to know about your experience with the Chordoma Foundation Patient Navigation Service.

If you would like to provide your name, please do so here. Otherwise, you can remain anonymous.

Thank you very much for taking the time to fill out this survey!

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