BrAIST AIS Patient Decision Aid Project: Survey for Parents

[Lori Dolan]

Adolescent Idiopathic Scoliosis Patient Decision Aid Project

**We are interested in hearing from parents of patients with AIS who were diagnosed between the ages of 9 and 15.**

We invite you to participate in a research study being conducted by investigators from The University of Iowa. The purpose of the study is to determine what information families need in order to make informed, personalized decisions about treatment for adolescent idiopathic scoliosis (AIS).

The first step of this project is to find out what patients and families need and want to know in order to make these decisions. We’re also interested in how to communicate risk and benefit information from the BrAIST study using different types of charts and graphs.

If you agree to participate, we would like you complete an on-line survey. There are 61 questions, but depending on your experiences with scoliosis, you may not be asked to answer all of them. Many of the questions are open-ended, asking you to type in your opinions about different aspects of scoliosis treatment and about graphs and charts presenting risk/benefit information. You may provide us with as much or little information as you wish. You can also skip any questions you do not want to answer. The survey should take about 10-20 minutes to complete.

Taking part in this research study is completely voluntary. We will not collect your name or any identifying information about you. It will not be possible to link you to your responses on the survey.

If you have questions about the rights of research subjects, please contact the Human Subjects Office, 105 Hardin Library for the Health Sciences, 600 Newton Rd, The University of Iowa, Iowa City, IA 52242-1098, (319) 335-6564, or e-mail irb@uiowa.edu

Thank you very much for your consideration of this research study.

Sincerely,

Lori Ann Dolan, PhD and
Stuart L. Weinstein, MD


Once you start the survey, you will have to finish it all in one sitting, so please allow adequate time once you start.

If you agree to participate, please access the survey using the link below.

[LindaRacine]

Hi Lori...

Do you want only parents of kids with scoliosis, or do you also want adult scoliosis patients? Also, what about parents whose kids are past the age of adolescence?

--Linda

[Pooka1]

I can answer those questions in hindsight after my twins were fused, one having worn a brace. Do you want retrospective also or just prospective answers?

Also, if I might, WRT your BrAIST publication, when you didn't include the ending curve measurements but just presented successful or not, I assumed you were going to present those data in a second publication. Have you published them and, if not, do you intend to publish them? With a 49* curve that has up to 25% growth remaining counted as a success, parents are still at sea to a large extent when trying to answer the question whether brace wear avoids surgery. That is, of course, the central question that the publication didn't answer because ending curve measurements were not given.

If you are not intending to publish, could you just mention:

1. what percent of the bracing successes ended up in the 40* - 49* range?
2. what percent of the bracing successes that were in the 35* - 49* range had growth remaining?
3. what were the measurements in the dose-response curve and did any of those cases have growth remaining?
4. are you following up with these cases? How many of the bracing successes when on to have fusion?

Thanks in advance and best regards.

[Lori Dolan]

Hello -

We are interested in hearing about families' experience with diagnosis, education and treatment. So, yes, hindsight is welcome!

[Pooka1]

http://srs.gmetonline.com/ViewPresen...onpackageid=12

1. post brace progression rate higher than natural history

2. Curve magnitude at completion ALONE is predictive of post-brace surgical progression. (This is what the BrAIST authors need to address in their results. Because they didn't publish the post-bracing curve magnitudes, and because curves up to 49* with up to 25% growth remaining were bracing "successes", it is IMPOSSIBLE to use their results to determine how much bracing avoids surgery.)

3. >80% of patients who completed bracing at > or = 45* reached post-brace surgical progression.

4. no patient who completed bracing with < 40* failed.

5. no patient with brace initiation at Risser II had post-brace surgical progression.