Chordoma Foundation

Chordoma Survivorship Survey

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Why are we conducting this survey?

The Chordoma Survivorship Initiative launched this year is a response to what we have heard from you, our community, about the ongoing quality of life impacts of chordoma. We’ve recognized that as more people are living with, through, and beyond chordoma, there are not only large areas of commonality with regard to quality of life issues experienced by chordoma survivors and co-survivors, but there are also gaps in the information and resources available to help you find the right care for these issues. 


Our goal, therefore, is to empower you to live the fullest lives possible by providing you with in-depth information, resources, and support to help fill those gaps so you can access the care and assistance you need. In order to best meet your needs, we want to learn more from you about the issues you’re facing, the resources that have helped (or been lacking), and how the Foundation can assist in better meeting your needs. 


What will be done with the results of this survey?

As we move forward with our Chordoma Survivorship Initiative plans, results of the survey will inform the areas we focus on when creating new educational materials, resources, and opportunities for connection and support. In the meantime, the survey results will be available to the whole community on our website, so we can all learn from each other.


You will remain anonymous unless you choose to share your name with us at the end of the survey. And even if you do choose to share your name, identifying information will never be published or shared in any way in connection with the survey.


The survey should take about 10 minutes to complete. If you have any problems, please email support@chordoma.org or click "Contact the Chordoma Foundation" at the bottom of any survey page.

Thank you for your time!


How are we defining the terms used in this survey?

Survivorship is often defined as the period of time after treatment ends, but some definitions state that survivorship begins at diagnosis. For the purposes of this survey, we are referring to survivorship as any point in time after treatment for chordoma has begun.

Survivors are those who have begun treatment for chordoma.

Co-survivors are parents, children, spouses, and close family and friends of survivors.

Quality of life is the overall enjoyment of life. It is influenced by the physical, emotional, social, and practical experiences and needs of chordoma survivors and co-survivors.

Survivorship care is any care, assistance, or support provided to survivors and co-survivors to address issues that affect quality of life after a diagnosis of chordoma.


General information about you







Your diagnosis and treatment



When were you first diagnosed?











Thank you for your time!


Because you have not yet received treatment following a new diagnosis, the survey will end here. The remaining questions in the survey focus on quality of life needs during and after treatment. 

We sincerely hope you will come back and complete the survey once you have begun treatment!

Please click through to the final page of the survey to submit the answers you have provided so far.

Survivorship Care

Not at all Slightly Moderately Very Extremely



Quality of life experiences






Accessing care, assistance, or support for quality of life needs

Were you able to access care, assistance, or support for the physical issues you indicated having experienced?


Use the following key for your answers:

  1. No, it was unavailable
  2. I did not know where or how to access it, or if it was available
  3. It was available but I did not access it
  4. It was available but I did not qualify for it
  5. It was accessed and it met my needs
  6. It was accessed and it did NOT meet my needs
1 2 3 4 5 6

Were you able to access care, assistance, or support for the emotional and cognitive issues you indicated having experienced?


Use the following key for your answers:

  1. No, it was unavailable
  2. I did not know where or how to access it, or if it was available
  3. It was available but I did not access it
  4. It was available but I did not qualify for it
  5. It was accessed and it met my needs
  6. It was accessed and it did NOT meet my needs
1 2 3 4 5 6


Were you able to access care, assistance, or support for the social and practical issues you indicated having experienced?


Use the following key for your answers:

  1. No, it was unavailable
  2. I did not know where or how to access it, or if it was available
  3. It was available but I did not access it
  4. It was available but I did not qualify for it
  5. It was accessed and it met my needs
  6. It was accessed and it did NOT meet my needs
1 2 3 4 5 6

Impact of COVID-19

What type of impact has the COVID-19 pandemic had on the following aspects of your care?

NA/Not needed No impact Currently delayed Received but with difficulty/delay Not able to receive

How can we help?










Your family member or friend's diagnosis and treatment


When was your family member or friend first diagnosed? 
(you can estimate if needed)











Your family member or friend's diagnosis and treatment












Thank you for your time!


Because your family member or friend has not yet received treatment following a new diagnosis, the survey will end here. The remaining questions in the survey focus on quality of life needs during and after treatment. 

We sincerely hope you will come back and complete the survey once they have begun treatment!

Please click through to the final page of the survey to submit the answers you have provided so far. 

Survivorship Care

Not at all Slightly Moderately Very Extremely



Quality of life experiences

As a caregiver or loved one of someone with chordoma, you are an important part of the survivorship experience as well. Please answer the following questions from your perspective, based on anything you have experienced during the time since your family member or friend was diagnosed.




Accessing care, assistance, or support for your quality of life needs

Were you able to access care, assistance, or support for the emotional and cognitive issues you indicated having experienced?


Use the following key for your answers:

  1. No, it was unavailable
  2. I did not know where or how to access it, or if it was available
  3. It was available but I did not access it
  4. It was available but I did not qualify for it
  5. It was accessed and it met my needs
  6. It was accessed and it did NOT meet my needs
1 2 3 4 5 6


Were you able to access care, assistance, or support for the social and practical issues you indicated having experienced?


Use the following key for your answers:

  1. No, it was unavailable
  2. I did not know where or how to access it, or if it was available
  3. It was available but I did not access it
  4. It was available but I did not qualify for it
  5. It was accessed and it met my needs
  6. It was accessed and it did NOT meet my needs
1 2 3 4 5 6

Impact of COVID-19

What type of impact has the COVID-19 pandemic had on the following aspects of your family member or friend's care?

NA/Not needed No impact Currently delayed Received but with difficulty/delay Not able to receive I don't know

How can we help?












Survivor's quality of life experiences






Accessing care, assistance, or support for the survivor's quality of life needs

Was your family member or friend able to access care, assistance, or support for the physical issues you indicated they experienced?


Use the following key for your answers:

  1. No, it was unavailable
  2. They did not know where or how to access it, or if it was available
  3. It was available but they did not access it
  4. It was available but they did not qualify for it
  5. It was accessed and it met their needs
  6. It was accessed and it did NOT meet their needs
  7. I don’t know
1 2 3 4 5 6 7


Was your family member or friend able to access care, assistance, or support for the emotional and cognitive issues you indicated they experienced?


Use the following key for your answers:

  1. No, it was unavailable
  2. They did not know where or how to access it, or if it was available
  3. It was available but they did not access it
  4. It was available but they did not qualify for it
  5. It was accessed and it met their needs
  6. It was accessed and it did NOT meet their needs
  7. I don’t know
1 2 3 4 5 6 7


Was your family member or friend able to access care, assistance, or support for the social and practical issues you indicated they experienced?


Use the following key for your answers:

  1. No, it was unavailable
  2. They did not know where or how to access it, or if it was available
  3. It was available but they did not access it
  4. It was available but they did not qualify for it
  5. It was accessed and it met their needs
  6. It was accessed and it did NOT meet their needs
  7. I don’t know
1 2 3 4 5 6 7

Thank you for completing this survey!






Do you need assistance?

Please don't hesitate to contact our Patient Navigators at 
chordoma.org/request-help or by email at support@chordoma.org if there is any way we can assist you.

 

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