BRAIN METASTASES QUESTIONNAIRE

Brain Metastases Quantitative Questionnaire - ENG 2nd July (#14)

HELPFUL DEFINITIONS OF TERMS USED IN THIS SURVEY

Primary cancer: the original place in the body where cancer first starts to grow. In the case of this survey, we are interested in hearing from people with primary cancer of the breast, lung, kidneys, skin (melanoma) or bowel (known as “colorectal cancer”).

Metastatic cancer: cancer that has spread from its original location in the body to other parts of the body. In the case of this survey, we are interested in hearing from people with metastatic cancer where the original cancer they were diagnosed with has spread to the brain/central nervous system or leptomeninges (also known as leptomeningeal disease, lepto, or LMD).

Cancer recurrence: this is when your original, ‘primary’ cancer returns after a period of remission when little to no cancer was found in your body.

Histology: the study of the structure of tissues and cells under a microscope.

Biomarker testing: the analysis of samples (ie tissue, blood, etc) to detect specific genes, proteins or other molecules in order to provide information about a disease, potentially what treatment to use against it and what a person’s prognosis (the likely course of disease) might be.

MRI: short for magnetic resonance imaging; MRI is a non-invasive medical imaging examination. It uses a magnetic field and computer-generated radio waves to create detailed images of organs and tissues in the body.

Clinical trial: a clinical trial is a research study that tests how well a new medical, surgical or behavioural intervention works in people. These studies test new methods of screening, prevention, diagnosis, treatment or supportive care regarding a disease. Clinical trials may be observational (no new treatment is involved) or interventional (evaluating effects of new interventions on health outcomes).

De novo: when cancer is diagnosed at the stage where it has already spread to other parts of the body (ie to the brain/central nervous system), without a known history of a prior, localized primary tumour.

SECTION S - PLEASE GIVE US SOME BACKGROUND INFORMATION ABOUT YOURSELF

First we'd like to ask you some background questions about yourself.  This first question is about cancer recurrence of your ‘primary cancer’. When we refer to ‘primary cancer' which you were diagnosed with, we mean the original site of cancer growth in the body, usually in an organ or tissue.

Reminder

Throughout the rest of this survey, when we refer to ‘primary cancer' you were diagnosed with, we mean the original site of cancer growth in the body, usually in an organ or tissue.

SECTION L - FOR SURVEY PARTICIPANTS DIAGNOSED WITH LUNG CANCER

This section (Section L) is only for people who have been diagnosed with lung cancer as their primary cancer and a brain tumour/s as their secondary (metastatatic) cancer. If you do not have lung cancer, please skip to the section in this survey which addresses your primary cancer, ie melanoma (Section M), breast cancer (Section B), colorectal cancer (Section C) or kidney cancer (Section K) below.

SECTION M - FOR SURVEY PARTICIPANTS DIAGNOSED WITH MELANOMA

This next section (Section M) is only for people who have been diagnosed with melanoma as their primary cancer and a brain tumour/s as their secondary (metastatatic) cancer. If you do not have melanoma, please go to the section in this survey which addresses your primary cancer, ie lung cancer (Section L), breast cancer (Section B), colorectal cancer (Section C) or kidney cancer (Section K).

SECTION B - FOR SURVEY PARTICIPANTS DIAGNOSED WITH BREAST CANCER

This next section (Section B) is only for people who have been diagnosed with breast cancer as their primary cancer and a brain tumour/s as their secondary (metastatatic) cancer. If you do not have breast cancer, please skip to the section in this survey which addresses your primary cancer, ie lung cancer (Section L), melanoma (Section M), colorectal cancer (Section C), or kidney cancer (Section K).

Now we have some questions about subtype. This means things like estrogen, progesterone, and HER2 status. It is okay if you don’t know or don’t remember. First, please think back to when you were first diagnosed with breast cancer.

SECTION C - FOR SURVEY PARTICIPANTS DIAGNOSED WITH COLORECTAL CANCER

This next section is only for people who have been diagnosed with colorectal cancer as their primary cancer and a brain tumour/s as their secondary (metastatatic) cancer. If you do not have colorectal cancer, please skip to the section in this survey which addresses your primary cancer, ie lung cancer (Section L), melanoma (Section M), breast cancer (Section B), or kidney cancer (Section K).

SECTION K - FOR SURVEY PARTICIPANTS DIAGNOSED WITH KIDNEY CANCER

This next section is only for people who have been diagnosed with kidney cancer as their primary cancer and a brain tumour/s as their secondary (metastatatic) cancer . If you do not have kidney cancer, please skip to the section in this survey which addresses your primary cancer, ie lung cancer (Section L), melanoma (Section M), breast cancer (Section B), or colorectal cancer (Section C) above.

SECTION Q - DISCUSSION ABOUT CNS/BRAIN METASTASES

For the remainder of the survey, please think about your primary tumor as you respond.

We’ll start back at the time when you were FIRST diagnosed with your primary tumor.  

Q4. Thinking about those earlier conversations with your healthcare team, and if you were given information, how helpful was the information provided for each of these three topics below?    

CNS/BRAIN METASTASES DIAGNOSIS OVERVIEW

The next questions are about when you were diagnosed with CNS/brain metastases.

CURRENT CARE FOR CNS/BRAIN METASTASES

The next questions are about your current care for CNS/brain metastases.

CNS/BRAIN METASTASES DIAGNOSIS

More about your experiences.

Q28. After your CNS/brain metastases diagnosis, how helpful was the information provided by your healthcare team on:

SECOND OPINIONS

The next set of questions is about second opinions.

BRAIN METASTASES TREATMENT

The next set of questions is about treatment for CNS/brain metastases.

CLINICAL TRIALS

Now we’d like to talk about clinical trials.  Please keep in mind, a clinical trial is a research study that tests how well a new medical, surgical or behavioural intervention works in people. These studies test new methods of screening, prevention, diagnosis, treatment or supportive care regarding a disease. Clinical trials may be observational (no new treatment is involved) or interventional (evaluating effects of new interventions on health outcomes).   Both types of clinical trials apply to the following questions in this section.

Q50.  Has your doctor ever recommended your participation in the following?

Q51. How willing are you to participate in the following?

ADVOCACY ORGANIZATION ROLES AND RESPONSIBILITIES

We'd now like to ask you about patient advocacy organizations. These organizations are non-profit groups, foundations or charities that work to improve the health and well-being of patients and their families.

SECTION D - DEMOGRAPHICS

Finally, our last few questions – again, anonymous and confidential - are just to give a little more background  about you and are used only for statistical purposes.

Thank you but there is no need to proceed further with this questionnaire as our research is only on primary cancers that have spread to the brain (known as “brain metastases”).

Thank you for taking the time to participate in this survey.  Your input will help identify unmet needs in information, support and care for patients living with CNS/brain metastases so that these gaps can be addressed. We plan to drive actionable change for people living with CNS/brain metastases.

PLEASE ENSURE YOU CLICK THE SUBMIT BUTTON SO THAT YOUR ANSWERS ARE SUBMITTED.