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.

Policy Acceptance

I have read and accept the Chordoma Foundation's Terms of Use and Privacy Policy.

General information about you

What country do you currently live in?

State

Province

What language do you speak most often?

Your age

How has chordoma affected you?

I have or had chordomaMy spouse or partner has or had chordomaMy child has or had chordomaMy parent has or had chordomaSomeone in my family or a close friend has or had chordoma

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.

1: Skip to last page

YesNo

Survivorship Care

When you completed your most recent chordoma treatment, were you given a Survivorship Care Plan?

YesNoI'm not sureDoes not apply

How was the plan helpful to you, if at all?

When you completed your most recent chordoma treatment, did your doctor or nurse do any of the following? (Select all that apply)

Give you a written plan of follow-up appointmentsDiscuss when to contact them with concerns or new symptomsProvide you with information to give to your primary care provider about chordoma Provide you with information to give to your primary care provider about the treatment you receivedSend a copy of your treatment records to your primary care providerDiscuss any current or possible quality of life issues with you, including how to seek care for those issuesNone of the aboveDoes not apply

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:

No, it was unavailable
I did not know where or how to access it, or if it was available
It was available but I did not access it
It was available but I did not qualify for it
It was accessed and it met my needs
It was accessed and it did NOT meet my 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:

No, it was unavailable
I did not know where or how to access it, or if it was available
It was available but I did not access it
It was available but I did not qualify for it
It was accessed and it met my needs
It was accessed and it did NOT meet my needs

	1	2	3	4	5	6
Anxiety or fearfulness
Concerns about fertility
Decreased interest in sex
Depression or sadness
Difficulty being intimate with your partner
Difficulty concentrating or confused thinking
Difficulty relating to others
Difficulty sleeping
Fear of recurrence
Feelings of loneliness or isolation
Feelings of loss or grief
Negative self-image
Preoccupied with concerns about cancer
Struggles with faith or spiritual beliefs
Trouble remembering things
Difficulty finding doctors or specialists for quality of life needs
Difficulty helping friends and family cope with my diagnosis
Difficulty paying for travel, lodging, or other care expenses related to chordoma or quality of life needs

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:

No, it was unavailable
I did not know where or how to access it, or if it was available
It was available but I did not access it
It was available but I did not qualify for it
It was accessed and it met my needs
It was accessed and it did NOT meet my needs

	1	2	3	4	5	6
Difficulty paying medical bills
Difficulty paying other bills
Difficulty talking about chordoma and how it has affected my life
Difficulty with daily living activities (e.g., dressing, bathing, eating)
Inability to participate in social activities
Inability to work or go to school
Insurance denials or lack of coverage for chordoma-related care
Lack of emotional support
Lack of social support
Unmet housing needs

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
Follow-up imaging and exams
Appointments with doctors and specialists
Access to elective treatment
Access to urgent or medically necessary treatment
Access to medications

What other impact, if any, has the pandemic had on your care?

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.

2: Skip to last page

YesNo

Survivorship Care

When your family member or friend completed their most recent chordoma treatment, were they given a Survivorship Care Plan?

YesNoI'm not sureDoes not apply

How was the plan helpful, if at all?

When your family member or friend completed their most recent chordoma treatment, did their doctor or nurse do any of the following? (Select all that apply, that you are aware of)

Give them a written plan of follow-up appointmentsDiscuss when to contact the doctor with concerns or new symptomsProvide them with information to give to their primary care provider about chordoma Provide them with information to give to their primary care provider about the treatment they receivedSend a copy of their medical records to their primary care providerDiscuss any current or possible quality of life issues with them, including how to seek care for those issuesI don’t knowNone of the aboveDoes not apply

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:

No, it was unavailable
I did not know where or how to access it, or if it was available
It was available but I did not access it
It was available but I did not qualify for it
It was accessed and it met my needs
It was accessed and it did NOT meet my needs

	1	2	3	4	5	6
Anxiety or fearfulness
Concerns about fertility
Decreased interest in sex
Depression or sadness
Difficulty being intimate with your partner
Difficulty concentrating or confused thinking
Difficulty relating to others
Difficulty sleeping
Fear of recurrence
Feelings of loneliness or isolation
Feelings of loss or grief
Negative self-image
Preoccupied with concerns about cancer
Struggles with faith or spiritual beliefs
Trouble remembering things

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:

No, it was unavailable
I did not know where or how to access it, or if it was available
It was available but I did not access it
It was available but I did not qualify for it
It was accessed and it met my needs
It was accessed and it did NOT meet my needs

	1	2	3	4	5	6
Difficulty finding doctors or specialists for quality of life needs
Difficulty helping my family member or friend cope with their diagnosis
Difficulty helping others cope with the patient's diagnosis
Difficulty paying for travel, lodging, or other care expenses related to chordoma or quality of life needs
Difficulty paying medical bills
Difficulty paying other bills
Difficulty talking about chordoma and how it has affected my life
Inability to participate in social activities
Inability to work or go to school
Insurance denials or lack of coverage for their chordoma-related care
Lack of emotional support
Lack of social support
Unmet housing needs

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
Follow-up imaging and exams
Appointments with doctors and specialists
Access to elective treatment
Access to urgent of medically necessary treatment
Access to medications

What other impact, if any, has the pandemic had on their care?

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:

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

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:

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

	1	2	3	4	5	6	7
Anxiety or fearfulness
Concerns about fertility
Decreased interest in sex
Depression or sadness
Difficulty being intimate with your partner
Difficulty concentrating or confused thinking
Difficulty relating to others
Difficulty sleeping
Fear of recurrence
Feelings of loneliness or isolation
Feelings of loss or grief
Negative self-image
Preoccupied with concerns about cancer
Struggles with faith or spiritual beliefs
Trouble remembering things

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:

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

	1	2	3	4	5	6	7
Difficulty finding doctors or specialists for quality of life needs
Difficulty helping their loved ones cope with their diagnosis
Difficulty paying for travel, lodging, or other care expenses related to chordoma or quality of life needs
Difficulty paying medical bills
Difficulty paying other bills
Difficulty talking about chordoma and how it has affected life
Difficulty with daily living activities (e.g., dressing, bathing, eating)
Inability to participate in social activities
Inability to work or go to school
Insurance denials or lack of coverage for chordoma-related care
Lack of emotional support
Lack of social support
Unmet housing needs

Co-survivor/caregiver/wants to answer: Skip to the last page

YesNo

Thank you for completing this survey!

Would you like to provide us with your name and email so we can follow up with you as new resources are developed?

Yes, I would like to give you my name and emailNo, I would like to remain anonymous

First Name

Last Name

Email

Contact consent The Chordoma Foundation values your privacy and will not sell or share your information with any other organizations. Would you like us to contact you with updates including our e-newsletter, progress updates, the latest research and treatment advances, educational resources and events, and opportunities to get involved?

YesNo

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.

	1	2	3	4	5	6
Balance impairment
Bladder dysfunction
Bone fracture
Bowel dysfunction
Chronic pain
Chronic sinus problems
Difficulty sitting
Endocrine system imbalance
Facial paralysis
Fatigue
Headaches
Hearing impairment or loss
Loss of mobility in arms or hands
Loss of mobility in legs or feet
Nausea or vomiting
Numbness or tingling
Sexual dysfunction
Swallowing or speech issues
Vision issues
Wound healing issues

	1	2	3	4	5	6	7
Balance impairment
Bladder dysfunction
Bone fracture
Bowel dysfunction
Chronic pain
Chronic sinus problems
Difficulty sitting
Endocrine system imbalance
Facial paralysis
Fatigue
Headaches
Hearing impairment or loss
Loss of mobility in arms or hands
Loss of mobility in legs or feet
Nausea or vomiting
Numbness or tingling
Sexual dysfunction
Swallowing or speech issues
Vision issues
Wound healing issues

Why are we conducting this survey?

What will be done with the results of this survey?

Thank you for your time!

General information about you

Your diagnosis and treatment

Thank you for your time!

Survivorship Care

Quality of life experiences

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

Impact of COVID-19

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

How can we help?

Your family member or friend's diagnosis and treatment

Your family member or friend's diagnosis and treatment

Thank you for your time!

Survivorship Care

Quality of life experiences

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

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?

How can we help?

Survivor's quality of life experiences

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

Thank you for completing this survey!