We want to learn about health care issues that are important to you. Together with Dawne Widener-Burrows, a professional market researcher with extensive experience in medical market research, we conducted an online survey among adults with Spina Bifida and parents/people caring for someone with Spina Bifida.*

To get started, we looked at the research gaps identified in the Guidelines for the Care of People with Spina Bifida, and from there we developed an online survey (in English and Spanish) that we sent to our database of over 20,000 individuals. The survey explored 27 issues, and over 1,700 people responded!  Later, we also held adult and parent focus groups moderated by Ms. Burrows.

Who Responded?

 

As you can see, our survey respondents consisted of adults with Spina Bifida (45%) and parents of a child with Spina Bifida (49%).  Also, 6% of the people who responded were a caregiver of someone with Spina Bifida.

Below you will find a chart with the demographics of the people who responded.

Respondent Demographics

Here’s what the Top 5 reported issues/problems were overall

Many issues are the same across the three groups; it’s the ranking that changes.

What did we hear in the Focus Groups?

Results from the online survey provided the topics that were explored in depth in the groups. The focus group results were consistent with what we learned from the online survey and provided greater insight into the top issues for parents and adults.

So, what’s next?

We have ambitious plans to use this data to drive future research into the care of people with Spina Bifida. We will:

• Create a research agenda to advance care for those with Spina Bifida that will focus on the biggest issues identified through the survey and in the Guidelines.
• Use the research agenda to serve as a platform to attract researchers to conduct research on these topics.
• Take this information to the National Institutes of Health (NIH) to generate interest with researchers across various Institutes.
• Use this data in our advocacy work. All of us can take these issues to our legislators.
• Work with researchers to create an effective bowel management program for people with Spina Bifida.

Watch for more surveys from us in the future to provide data that can be used to increase our understanding of what it’s like to live with Spina Bifida and the challenges that people in the Spina Bifida community face.

 

 

*Ms. Burrows conducted the research pro bono.