Hydrocephalus Canada

Will my child’s life be better after this surgery? Quality of life in children with spina bifida.

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Doctors have a perception of what might make children and families happy. But our real desire is to find out how happy children and families really are. We would like to investigate children’s feelings further, to see if the care and surgeries we provide are enhancing their quality of life. 

In order to properly assess a person’s quality of life, special questionnaires are necessary. Asking: “Are you feeling better or happier?” is just not enough. Questions for patients need to be understood and answered by the patients and families. The questions need to focus specifically on what is important to the patients. But, this process takes time… and help from patients and their families.

The Division of Pediatric Urology at Riley Hospital for Children is currently developing a questionnaire for children, teens, and adults with Spina Bifida to allow us to measure the quality of life of our patients. This questionnaire will help us understand if patients are doing better in certain areas of their life, or struggling in others.  We want to improve the quality of life of our patients. If you (or your child) had Spina Bifida surgery on your spine as a newborn, you can help!

We are looking for children 8 years old or older, teens and adults with Spina Bifida. Ultimately, we hope this will help others with Spina Bifida. Helping with this important project would require people with Spina Bifida and their parents or caregivers to complete a 20-minute online questionnaire on a secure website. We do not keep patient information and all information is anonymous. We will ask for a few general medical details, as well as questions about how the child, teen or adult with Spina Bifida feels.

If you are interested in participating in our project, please go to: www.surveymonkey.com/s/QSB to fill out the questionnaire.

Thank you for your help!

Research Team: Konrad M. Szymanski, MD MPH, Rosalia Misseri, MD, Benjamin Whittam, MD, Shelly King, RN CPNP, Katherine C. Hubert, MD MPH, Martin Kaefer, MD, Richard C. Rink, MD, Mark P. Cain, MD
Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indianapolis, IN