Blog PostsNov 9, 2022

Spina Bifida Financial Toxicity Project

Brief Project Description

Medical care can be very expensive. The excessive costs can cause financial problems for people leading to financial stress, hardship, and worry. This can even impact one’s mental and physical health. This concept is described by the term ‘Financial Toxicity.’

Unfortunately, there is no established way to measure Financial Toxicity. While it is easy to measure dollars and cents, it is difficult to measure stress, worries, and other emotions related to medical costs. That’s why we have teamed up with Duke University researchers to create a survey that attempts to capture and quantify these costs.

We need your help in perfecting this survey and ensuring that it truly measures the unique feelings, attitudes, and experiences of individuals with Spina Bifida and their care partners. The survey and the data collected from the survey will be used to help us advocate for the Spina Bifida community and better support you.



There are two versions of the survey – one for adults with Spina Bifida who financially support themselves, and one for care partners who support a person with Spina Bifida. To participate in the survey, click here. You will be prompted to select a response category: person with Spina Bifida OR parent/guardian of person with Spina Bifida.

If you have questions about the Financial Toxicity Project, please contact Duke University Hospital Resident, Rafael Tua-Caraccia, at [email protected].



Who is performing this study?

This study is being carried out by the Spina Bifida Association (SBA) in partnership with Duke University. The Duke research and clinical collaborators have decades of experience caring for individuals with Spina Bifida and have worked with SBA on projects in the past.

What is the purpose of this study?

The purpose of this study is to create a way to measure ‘Financial Toxicity’ in the Spina Bifida community. Financial Toxicity encompasses both the actual cost of medical care as well as the stress, hardships, and worry that comes from paying for those costs.

Why is this study being performed?

If we have a way to measure Financial Toxicity, we would be able to better advocate for the financial needs of our community. Medical providers and Spina Bifida clinics will be able to better understand people’s financial situation and connect them with helpful resources.

How will this study help the Spina Bifida community?

While it is easy to measure dollars and cents, it is difficult to measure stress, worries, and other emotions related to medical costs. This study will help us develop a tool to measure and better understand the Financial Toxicity of Spina Bifida. Though this understanding, we would be in a better position to advocate for and support the Spina Bifida community.

Who can participate in this study?

There are two groups who are eligible to take this survey:

  1. Adults with Spina Bifida who are financially supporting themselves
  2. Care partners (parents, grandparents, guardians, etc.) who financially support children or adults with Spina Bifida

What if I do not have any financial stress from medical costs?

Whether you do or do not have financial toxicity, we care and are very interested in everyone’s experience. This survey is meant to look at the whole range of financial toxicity, from those that do not have any financial burden to those that have a lot, and everyone in between.

How long will the survey take?

The survey will take approximately 15 minutes to complete.

Will I get paid for my participation in this study?

You will not be paid or compensated to take this survey. Since the survey asks financial questions, paying people to take it may bias the results.

Will I need to provide any personal information?

No. You will not be asked for any specific personal information that can identify you such as your name, date of birth, or address. We will ask for general demographic information such as age, race, income range, and medical services utilization.

If you are willing, there will be an option to retake the survey at a later time. This will help us understand how people’s responses change over time. If you choose to do this, you will need to provide your email. This is a totally optional part of the study.

Is my IP address tracked?

Your IP address will not be available to us. The survey system used by Duke University (Qualtrics) will use the IP address to ensure there are no duplicate responses but it will prevent us from seeing your IP address.

Who will have access to the information on the survey?

The information gathered from the survey will be accessible to the Spina Bifida Association staff involved in the project, the Duke University researchers involved in the study, and the Duke University Institutional Review Board that regulates this research.

How do I consent for this study?

By taking this survey, you provide your consent to participate in this study.

Is there a regulatory body that approved this study and is overseeing it?

Yes, the Duke University Institutional Review Board (IRB) has granted approval for the study and is the ethical regulator for the study.

What if I already started the survey but decide that I no longer want to participate in the study?

You can withdrawal from the study at any time, even while you are taking the survey. Your partial responses will not be used.

How many times could I take this survey?

Please take the survey one time.


Thank you for your interest in taking this survey. If you have any questions or feedback regarding the survey, please contact Duke University Hospital Resident, Rafael Tua-Caraccia, at [email protected].