Your Scoliosis Journey: A Survey for Patients Treated for Scoliosis and Their Families
Your Scoliosis Journey is a multicenter research study, including Mayo Clinic, to gather information from patients with scoliosis and their families about their experiences with scoliosis treatment.
The principal investigator at Mayo Clinic for Your Scoliosis Journey is Todd A. Milbrandt, M.D., a consultant in orthopedic surgery at Mayo Clinic in Rochester, Minnesota, and an associate professor of orthopedics and pediatrics in the Mayo Clinic College of Medicine and Science. The co-principal investigator at Mayo Clinic is A. Noelle Larson, M.D., a consultant in orthopedic surgery at Mayo Clinic in Rochester and an associate professor of orthopedics in the Mayo Clinic College of Medicine and Science.
The scoliosis study, formally called Your Scoliosis Journey: A Survey for Patients Treated for Scoliosis and Their Families, consists of an anonymous one-time participant survey completed online.
Your Scoliosis Journey overview
The purpose of this survey research study is twofold:
- To improve the scoliosis study team's understanding of the experience of the patient and family during treatment for scoliosis
- To help determine which decision-making tools are best to facilitate understanding of scoliosis treatment options
The results of the survey ultimately will guide the scoliosis study team in creating a shared-decision-making tool that can be used by patients, families and providers when discussing scoliosis treatment options.
The tool would be used to facilitate discussion with patients and families to help them better understand the outcomes related to the treatments being offered, including potential risks and benefits. The tool would also help providers understand the concerns of patients and families for each of the treatment options.
Previous research involving patients with scoliosis and their families indicates that treatment decisions have been primarily directed by parents and physicians — not by patients.
However, involving patients in the decision-making process can decrease their anxiety and increase their sense of efficacy and control, which in turn may also improve compliance with their chosen treatment.
Your Scoliosis Journey is open to anyone who has had treatment at any medical institution for adolescent idiopathic scoliosis (AIS) and their parents or caregivers. Treatment can include observation, bracing or surgery, or any combination of these treatments.
The study survey will be completed by both the patient and their parents.
Take the survey
Take the Your Scoliosis Journey survey.
Commonly asked questions
Here are commonly asked questions that participants in Your Scoliosis Journey might have.
I'm an adult who had scoliosis as a child. Can I complete the survey?
Yes. When the survey asks if you are a parent or guardian of a child diagnosed with scoliosis, choose "No" and continue with the survey as if you are the child. Answer the questions based on how you felt at the time of your scoliosis treatment when you were a child.
I had scoliosis and now my child also has scoliosis. Do I complete the survey twice?
Yes. Complete the survey twice. First, complete the survey as if you were the child, answering the questions based on how you felt at the time of your scoliosis treatment. Then, complete the survey a second time as the parent, and answer the questions based on how you felt when you were discussing scoliosis treatment for your child.
Will participating in the study improve my health?
There is no direct health benefit to you for participating in this study, and no remuneration is offered. The benefit is for research purposes — to help the scoliosis study team gain a better understanding of the experiences of patients and their families during scoliosis treatment.
How is confidentiality protected?
Participation in the survey is anonymous. The identity of each participant is protected by using a unique identifier number. There is no link back to you, so researchers won't know who has completed the survey. If you email the research team with questions or to participate in future studies, the study team won't be able to link your email address to the survey you completed.
Get more information about scoliosis and Your Scoliosis Journey:
If you want more study information or you're interested in participating in future studies about decision-making, email the study team at Mayo Clinic or call 507-538-3561.