O.I. wish orthopaedic surgeons had better strategies to help with...

Question Title

* 1. Please mark below how important to you or your child it is to improve care in each of these areas:

Below, ”you” refers to you or your child for whom you are completing this survey. You may complete the survey multiple times – once for each family member with OI.

	EXTREMELY IMPORTANT TO IMPROVE	VERY IMPORTANT TO IMPROVE	COULD BE HELPFUL	NOT NECESSARY TO IMPROVE	NOT IMPORTANT – ALREADY WORKED OUT WELL
Managing fractures that don’t need surgery	Managing fractures that don’t need surgery EXTREMELY IMPORTANT TO IMPROVE	Managing fractures that don’t need surgery VERY IMPORTANT TO IMPROVE	Managing fractures that don’t need surgery COULD BE HELPFUL	Managing fractures that don’t need surgery NOT NECESSARY TO IMPROVE	Managing fractures that don’t need surgery NOT IMPORTANT – ALREADY WORKED OUT WELL
Managing fracture pain	Managing fracture pain EXTREMELY IMPORTANT TO IMPROVE	Managing fracture pain VERY IMPORTANT TO IMPROVE	Managing fracture pain COULD BE HELPFUL	Managing fracture pain NOT NECESSARY TO IMPROVE	Managing fracture pain NOT IMPORTANT – ALREADY WORKED OUT WELL
Managing bone pain	Managing bone pain EXTREMELY IMPORTANT TO IMPROVE	Managing bone pain VERY IMPORTANT TO IMPROVE	Managing bone pain COULD BE HELPFUL	Managing bone pain NOT NECESSARY TO IMPROVE	Managing bone pain NOT IMPORTANT – ALREADY WORKED OUT WELL
Knowing when to perform rodding surgeries of arms	Knowing when to perform rodding surgeries of arms EXTREMELY IMPORTANT TO IMPROVE	Knowing when to perform rodding surgeries of arms VERY IMPORTANT TO IMPROVE	Knowing when to perform rodding surgeries of arms COULD BE HELPFUL	Knowing when to perform rodding surgeries of arms NOT NECESSARY TO IMPROVE	Knowing when to perform rodding surgeries of arms NOT IMPORTANT – ALREADY WORKED OUT WELL
Knowing when to perform rodding surgeries of legs	Knowing when to perform rodding surgeries of legs EXTREMELY IMPORTANT TO IMPROVE	Knowing when to perform rodding surgeries of legs VERY IMPORTANT TO IMPROVE	Knowing when to perform rodding surgeries of legs COULD BE HELPFUL	Knowing when to perform rodding surgeries of legs NOT NECESSARY TO IMPROVE	Knowing when to perform rodding surgeries of legs NOT IMPORTANT – ALREADY WORKED OUT WELL
Reducing the number of surgeries during childhood	Reducing the number of surgeries during childhood EXTREMELY IMPORTANT TO IMPROVE	Reducing the number of surgeries during childhood VERY IMPORTANT TO IMPROVE	Reducing the number of surgeries during childhood COULD BE HELPFUL	Reducing the number of surgeries during childhood NOT NECESSARY TO IMPROVE	Reducing the number of surgeries during childhood NOT IMPORTANT – ALREADY WORKED OUT WELL
Decreasing anxiety around fractures and surgeries	Decreasing anxiety around fractures and surgeries EXTREMELY IMPORTANT TO IMPROVE	Decreasing anxiety around fractures and surgeries VERY IMPORTANT TO IMPROVE	Decreasing anxiety around fractures and surgeries COULD BE HELPFUL	Decreasing anxiety around fractures and surgeries NOT NECESSARY TO IMPROVE	Decreasing anxiety around fractures and surgeries NOT IMPORTANT – ALREADY WORKED OUT WELL
Managing post-operative pain	Managing post-operative pain EXTREMELY IMPORTANT TO IMPROVE	Managing post-operative pain VERY IMPORTANT TO IMPROVE	Managing post-operative pain COULD BE HELPFUL	Managing post-operative pain NOT NECESSARY TO IMPROVE	Managing post-operative pain NOT IMPORTANT – ALREADY WORKED OUT WELL
Easier postoperative splinting/immobilization	Easier postoperative splinting/immobilization EXTREMELY IMPORTANT TO IMPROVE	Easier postoperative splinting/immobilization VERY IMPORTANT TO IMPROVE	Easier postoperative splinting/immobilization COULD BE HELPFUL	Easier postoperative splinting/immobilization NOT NECESSARY TO IMPROVE	Easier postoperative splinting/immobilization NOT IMPORTANT – ALREADY WORKED OUT WELL

Question Title

* 2. Have you been told that you could not have surgery or implants for a fracture or bowing due to being too young?

Yes

No

Question Title

* 3. If yes, which age range did this occur?

<5 years old

<4 years old

<3 years old

Question Title

* 4. Have you been told that you could not have surgery or implants for a fracture or bowing due to having bones that are too small?

Yes

No

Question Title

* 5. Do you or have you ever done aqua therapy?

Yes

No

Not sure

Question Title

* 6. Does your orthopaedic surgeon offer you surgery on long bones (femur, tibia, humerus) with telescoping (ie FD rods, Bailey-Dubow) rods?

Yes

No

Not sure

Question Title

* 7. Does your orthopaedic surgeon offer you surgery on long bones (femur, tibia, humerus) with non-telescoping rods (ie SLIM nail, k-wire, Williams rod)?

Yes

No

Not sure

Question Title

* 8. What type of OI do you have?

Type I

Type III

Type IV

Type V

Type VI

Type VII

Type VIII

Other

Not sure

Question Title

* 9. What is your OI severity?

Mild

Moderate

Severe

Question Title

* 10. What is your age? (in years)

Question Title

* 11. How do you move about outside the your home? (check all that apply):

Walk independently

Walker

Manual wheelchair

Power wheelchair

Question Title

* 12. Please include any comments you would like to pass along: