What Matters Most in OI Treatment? Survey

OIF Community Survey on Drug Treatment Priorities

The OIF is asking adults with OI and parents/caregivers of children with OI to share what matters most to them when thinking about OI drug treatments. We want to understand how OI affects you or your child and which aspects of health and daily life you would most like treatments to improve.
Your responses will help the OIF better understand the OI community’s treatment priorities and may be used to help inform researchers, clinicians, and others involved in developing and studying current and future OI drug treatments. You do not need to have taken part in a clinical trial or used an OI drug treatment to complete this survey.
Responses from all countries are welcome. If you are an adult with OI and also have a child with OI, you are welcome to complete the survey twice—once for yourself and once on behalf of your child.

1.Are you completing this survey:(Required.)

For yourself as a person with OI

As a parent/caregiver, answering based on what you believe would be most important to your child with OI

2.In what country do you/your child live in?(Required.)

4.What is the sex of the person with OI?(Required.)

Male

Female

Prefer not to say

Other (please specify)

5.Overall, how would you describe the severity of your/your child’s OI?(Required.)

Mild

Moderate

Severe

Unsure

7.How do you/your child usually get around at home? (Select all that apply)(Required.)

Walk independently

Walk with a mobility aid, such as crutches, a cane, or walker

Use a manual wheelchair

Use a power wheelchair or scooter

Other (please specify)

8.How do you/your child usually get around in the community? (Select all that apply)(Required.)

Walk independently

Walk with a mobility aid, such as crutches, a cane, or walker

Use a manual wheelchair

Use a power wheelchair or scooter

Other (please specify)

9.What are the most important things you would want a new OI drug treatment to do? (Select up to 3)(Required.)

Reduce the number of fractures

Reduce everyday bone and joint pain

Improve mobility, strength, or stamina

Prevent or slow hearing loss

Improve dental/tooth health

Improve respiratory function

Increase height

Reduce or prevent bone bowing or changes in bone shape

Other (please specify)

10.When thinking about getting around and doing everyday activities, which improvement would be most important to you/your child?(Required.)

Being able to walk longer distances or stand for longer periods

Having an easier time with transfers, such as getting in and out of a chair or bed

Having more upper-body strength for self-care or using a manual wheelchair

Feeling less tired during everyday physical activities

Other (please specify)

11.When thinking about a new OI drug treatment, how important is reducing ongoing pain compared with reducing fractures?(Required.)

Much more important to reduce pain

Equally important to reduce pain and fractures

Much more important to reduce fractures

12.If you/your child experience fatigue, which problem would you most want a new OI drug treatment to help with?(Required.)

Mental tiredness or “brain fog”

Physical exhaustion after limited activity

Difficulty staying awake or alert through the day

N/A — I/my child do not experience fatigue

13.How would you describe the frequency of pain you or your child have experienced in the past 4 weeks?(Required.)

I experience pain every day

I experience pain most days of the week

I experience pain a few times each month

I experience pain a few times each year

I experience pain only after an injury

Other (please specify)

14.If a drug greatly reduced your/your child’s pain but did NOT reduce the number of fractures, would you still consider the treatment valuable?(Required.)

Yes, reducing pain alone would make the treatment valuable

No, it would need to reduce both pain and fractures

Unsure (please explain)

15.If a drug greatly increased your/your child’s mobility, stamina, or ability to be active and participate in daily life, but did NOT reduce the number of fractures, would you still consider the treatment valuable?(Required.)

Yes, increasing mobility, stamina, or ability to be active and participate in daily life alone would make the treatment valuable

No, it would need to increase mobility, stamina, or ability to be active and participate in daily life and reduce fractures

Unsure (please explain)

16.Is there anything else you would like us to know about what would make a new OI drug treatment successful for you/your child?