1. Are you a parent or guardian of a child diagnosed with scoliosis? Yes
No
2. Do you have scoliosis? Yes
No
3. How would you describe where you live? Town (up to 25,000 people)
Suburban Area ( 25,000 - 50,000 people)
Large Urban/Metropolitan Area (more than 50,000 people)
4. Have any of your extended family members been diagnosed with scoliosis? Yes
No
Unknown
4a. Family members diagnosed Mother
Father
Sister
Brother
Grandmother
Grandfather
Aunt
Uncle
4b. How was your family member treated for their diagnosis? Observed
Braced
Surgery
Unknown
5. Are you currently Single
Married
Living with someone in a marriage-like relationship
Separated
Divorced
Widowed
6. How many people currently live in your home? 1
2
3
4
5
6
7
8
9
10
7. What is your racial/ethnic background? Asian
Black or African American
Caucasian/White
Indigenous people (Native American, Native Alaskan)
Latino-American/Hispanic
Multiracial
Other
Prefer not to disclose
8. Current age
9. Are your parents currently Single
Married
Living with someone in a marriage-like relationship
Separated
Divorced
Widowed
10. Have you had treatment for scoliosis? Yes, observation only (x-rays, doctors' visits)
Yes, bracing only
Yes, bracing then surgery
Yes, observation, bracing and then surgery
Yes, surgery alone
11. What treatment option did you choose initially? Observation (x-rays, doctors' visits)
Bracing
Surgery
12. What treatment option did you end up with at the completion of treatment? Observation
Bracing, then surgery
Bracing only
Surgery only
Still receiving treatment
13. About how old were you when you found out you had scoliosis? Less than 9 years old
9 to 14 years old
More than 14 years old
14. Do you have other medical conditions associated with scoliosis? Yes
No
14a. Please list other conditions
15. How would you describe your curve when you first found out about your diagnosis? Mild (less than 20 degrees)
Moderate (20 -30 degrees)
Moderate to Severe (30-50 degrees)
Severe (greater than 50 degrees)
Other
15a. Please describe
16. How would you describe your curve now? Mild (less than 20 degrees)
Moderate (20-30 degrees)
Moderate to Severe ( 30-50 degrees)
Severe (greater than 50 degrees)
I had surgery to correct scoliosis
Other
16a. Please describe
17. How did you feel when you were diagnosed with scoliosis? (choose any that apply) Surprised
Angry
Thankful for being caught early
Sad for being caught late
Guilty
Unhappy
Neutral
Other
17a. Describe other
18. What was memorable about your experience learning about scoliosis and treatment with your doctor?
19. What could have been done differently or better?
20. Did you and your family have input into the decision of how to treat your scoliosis? Yes, we were given treatment options
Yes, I felt included in the decision-making
No, only one treatment was recommended
No, I would have liked to have been more engaged in the decision-making
21. Would you have liked to have had more information provided to you about the decision? Yes, more information
No, had just the right amount of information
Other
21a. Please describe
22. Would you have liked to have had a greater role in the decision about how to treat your scoliosis? Yes, would have liked a greater role
No, I had just the right role
Other
22a. Please describe
23. Would you have liked your parent/guardian to have had a greater role in the decision about how to treat your scoliosis? Yes, my parent/guardian needed a bigger role in decision
No, my parent/guardian had just the right role in decision
Other
23a. Please describe
24. Who first noticed the curve? I noticed it myself and let others know
Parent or family member
School screening program
Healthcare exam by regular care provider (pediatrician, primary care provider)
Other
24a. Please describe
25. What best reflects the role of school screening in your diagnosis? No role to my knowledge
School screening first brought the curve to my attention
School screening was performed but curve was not noticed
Other
25a. Please describe
26. What best reflects the role of your primary care provider in your scoliosis diagnosis No role to my knowledge
Primary care provider/doctor first brought the curve to my attention
Physical exam was performed but curve was not noticed
Other
26a. Please describe
27. How did you feel about the treatment options offered to you for your scoliosis? (choose all that apply) Options were good
Too many options
Wished there were other treatment options
Actively looked at other treatment options such as chiropractor, physical therapy, or other options
Other
27a. Please describe
28. Was bracing recommended for your scoliosis? Yes
No (please go to question 41)
29. What is your understanding about how brace treatment works? (you may choose more than one answer) The brace permanently improves the curve size
The brace only prevents curve progression while I am growing and will not make the curve better
Proper use of the brace completely eliminates the chance of needing surgery
Other
29a. Describe other
30. Have you finished brace treatment? Yes
No
31. I find wearing the brace to be: Easy
Medium
Difficult
Very difficult
Other
31a. Describe other
32. It was recommended to wear the brace this many hours per day.
33. In general, I wear/wore the brace Less than recommended
About what was recommended
More than recommended
Other
33a. Describe other
34. The long-term effect of wearing the brace is Negative, affected my self-esteem and happiness
Neutral, no effect
Positive, made me a stronger person
Other
34a. Describe other
35. The most difficult things about wearing the brace includes (choose all that apply) Uncomfortable
Hot
Difficult to find clothing
Not enough time to do sports
Family conflict about wearing the brace
Wearing it to school
Cost of brace
Wearing it during the day
Wearing it at night
Peers teasing or bullying me
Other
35a. Describe other
36. What would you like to tell parents and children who are starting bracing now?
37. How would you describe your bracing experience? Easy and successful
Difficult but successful
Intermediate results
Easy but not successful
Difficult and not successful
38. Despite bracing, did you end up needing surgery? Yes, surgery was recommended
No, no surgery was recommended
39. If surgery was recommended after bracing, how did you feel when surgery was recommended? (choose all that apply) Glad that you still did the bracing - it was a necessary step
Disappointed that bracing didn't work, but I was aware that bracing may not be 100% successful
Disappointed that bracing didn't work and was not prepared for the possibility that bracing might fail
Felt badly that I should have worn the brace more
Felt disappointed because I wore the brace a lot and still needed surgery
Wish we had never done the bracing
Other
39a. Describe other
40. Below is recent data about the result of wearing a brace. Without the brace, 70% of adolescents required spine surgery; and with the brace, 40% of adolescents required spine surgery. Knowing this, would you still have chosen brace treatment? Yes
No
Other - added comments
40a. Comments
41. Given your experiences, is there anything that you would have done differently regarding your scoliosis treatment? Yes
No
41a. If yes, please explain.
42. What is your highest level of education? 8th grade or less
High School
Vocational or Technical
College or Associate Degree (including community college)
Graduate or Professional School
Other
43. What is your child's racial/ethnic background Asian
Black or African American
Caucasian/White
Indigenous people (Native American, Native Alaskan
Latino-American/Hispanic
Multiracial
Other
Prefer not to disclose
44. How many people are currently living in your household? 1
2
3
4
5
6
7
8
9
10
45. Has your child had treatment for scoliosis? Observation only
Yes, bracing
Yes, bracing then surgery
Surgery alone
46. How old was your child when they were diagnosed with scoliosis? younger than 9 years old
9-14 years old
older than 14 years old
47. Does your child have other medical conditions associated with the scoliosis? Yes
No
47a. Please describe other conditions
48. How would you describe your child's curve when it was first diagnosed? Mild (less than 20 degrees)
Moderate (20-30 degrees)
Moderate to Severe (30-50 degrees)
Severe (greater than 50 degrees)
Other
48a. Describe other
49. How would you describe your child's curve now? Mild (less than 20 degrees)
Moderate (20-30 degrees)
Moderate to Severe (30-50 degrees)
Severe (greater than 50 degrees)
Child had surgery to correct scoliosis
Other
49a. Describe other
50. How did you feel when your child was diagnosed with scoliosis? (choose any that apply) Surprised
Angry
Thankful for being caught early
Sad for being caught late
Guilty
Unhappy
Neutral
51. What was memorable about your experience learning about scoliosis diagnosis and treatment with your physician?
52. What could have been done differently or better?
53. Did you and your child have input into the decision of how to treat your child's scoliosis? We were given different treatment options
Only one treatment was recommended
We felt engaged in the decision-making
We would have liked to have been more engaged in the decision-making
54. What treatment options were presented to you? (choose all that apply) Bracing
Surgery
Observation
Other
54a. If other, please elaborate on other treatment option(s) that was/were presented to you.
55. Would you have liked more information provided to you about the decision to treat the scoliosis Yes, more information
No, had just the right amount of information
Other
55a. Describe other
56. As a parent, would you have liked to have had a greater role in the decision about how to treat your child's scoliosis? Yes, would have liked greater role
No, I had just the right role
Other
56a. Explain other
57. As a parent, would you have liked your child to have had a greater role in the decision about how to treat his/her scoliosis? Yes, child needed a bigger role in decision
No, child had right role in decision
Other
57a. Explain other
58. Who first noticed the curve? My child
Parent or family member
School screening program
Healthcare exam by regular care provider (pediatrician, primary care provider)
Other
58a. Explain other
59. What best reflects the role of school screening in your child's diagnosis No role to my knowledge
School screening first brought the curve to my attention
School screening was performed but curve was not noticed
Other
59a. Describe other
60. What best reflects the role of your primary care provider in your child's scoliosis diagnosis No role to my knowledge
Primary care provider/doctor first brought the curve to my attention
Physical exam was performed but curve was not noticed
Other
60a. Describe other
61. How did you feel about the treatment options offered for scoliosis treatments? (choose all that apply) Options were good
Too many options
Wished there were other treatment options
Actively looked at other treatment options such as chiropractor, physical therapy , or other modalities
Other
61a. Describe other
62. Was your child offered bracing Yes
No (please go to question 74)
63. What is your understanding of brace treatment? (choose all that apply) The brace permanently improves the curve size
The brace prevents curve progression while the child is growing
Proper use of the brace completely eliminates the chance of needing surgery
Other
63a. Describe other
64. Has your child finished brace treatment? Yes
No
65. For my child, wearing the brace was: Easy
Medium
Difficult
Very difficult
Other
65a. Describe other
66. My child wears/wore the brace: Less than was recommended
About what was recommended
More than recommended
Other
66a. Describe other
67. For my child, the long-term effect of wearing the brace was: Negative, affected my child's self esteem
Neutral, no effect
Positive, made my child a stronger person
Other
67a. Describe other
68. The most difficult things about wearing the brace includes (choose any that apply) Uncomfortable
Hot
Difficult to find clothing
Not enough time to do sports
Family conflict about wearing the brace
Wearing it to school
Cost of brace
Wearing it during the day
Wearing it at night
Other children teasing or bulling your child
Other
68a. Describe other
69. What would you like to tell parents and children who are starting bracing now?
70. How would you describe your bracing experience? Easy and successful
Difficult but successful
Intermediate results
Easy but not successful
Difficult and not successful
71. Despite bracing, did your child end up needing surgery? Yes, surgery recommended
No, no surgery recommended
72. How did you feel when surgery was recommended? (Choose all that apply) Glad that we still did the bracing - it was a necessary step
Disappointed that bracing didn't work, but I was aware that bracing may not be 100% successful
Disappointed that bracing didn't work and was not prepared for the possibility that bracing might fail
Felt badly, I should have had my child wear the brace more
Felt disappointed because my child wore the brace a lot and still needed surgery
Wish we had never done the bracing
Other
72a. Describe other
73. Below is recent data about the result of wearing a brace. Without the brace, 70% of adolescents required spine surgery; and with the brace, 40% of adolescents required spine surgery. Knowing this, would you still have chosen brace treatment? Yes
No
Other
73a. Describe other
74. Given your experience, is there anything that you would have done differently regarding your child's scoliosis treatment? Yes
No
74a. Please explain
75. My child's current treatment is.. Observation (includes completed bracing)
Bracing, then surgery
Bracing only
Surgery only
76. Please share some of the challenges that you face with your child's current treatment.
77. Is your child; Male
Female
Prefer not to say
78. Which factors were important in making a decision on the treatment plan? (Lifestyle, financial, etc.)
79. Please elaborate on the specific challenge that you faced while making the decision
80. Does the image below about the effect of brace wear appeal to you? Yes
No
81. Does the image below about the effect of brace wear appeal to you? Yes
No
82. Does the image below about the effect of brace wear appeal to you? Yes
No
83. Does the image below about the effect of brace wear appeal to you? Yes
No
84. Does this image about the effect of brace wear appeal to you? Yes
No
85. Does the image below about the effect of brace wear appeal to you? Yes
No
86. Of images in questions 80-85, which one is your favorite image? Question 80
Question 81
Question 82
Question 83
Question 84
Question 85
87. New research studies show that bracing even when worn full-time is not always successful to prevent surgery for scoliosis. Think about what percentage of success would make bracing worthwhile for you. For Instance, I would only go through bracing if: Bracing reduced the risk of surgery from 100% to 0%
Bracing reduced the risk of surgery from 100% to 20%
Bracing reduced the risk of surgery from 80% to 40%
Bracing reduced the risk of surgery from 50% to 30%
Insert your own percentage from __% to __%
87a. Bracing reduced the risk of needing surgery from
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