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The Care4BrittleBones Foundation is working with international experts in OI to develop basic recommendations to improve the wellbeing of adults (individuals aged 16 years and older) living with OI.

The Project team consists of
  • Prof. Kassim Javaid, Oxford, UK
  • Dr. Laura Tosi, Washington, USA
  • Dr. Angela Cheung, Toronto, Canada
  • Prof. Chapurlat and Dr. Alexandre Mercier, Lyon, France
  • Dr. Anne Marieke Dommisse, Isala, the Netherland
The project team will involve a wider network of ca. 30 professionals interested in Adult Health for OI. The project is administered by the Care4BrittleBones Foundation.

To help the project team, we have developed this survey to better understand how OI is currently managed in your country from your and your family’s perspectives. Because there are so many ways OI can affect an adults life, the survey is quite long and will take around 30 minutes to complete but your answers will be very important to help develop international recommendations to improve the care of adults with OI around the world. The focus is on countries with no or very limited infrastructure for Adults with OI. Know that you can stop in between and continue updating the survey later, if you are using the exact same digital device (eg your laptop).

We very much appreciate the time you take to complete the survey.

This survey is anonymous and we do not collect any personal information unless you choose to leave your email address. Your responses will be stored and used by the project team to help develop basic recommendations to support people with osteogenesis imperfecta.

If you choose to provide your email, it will only be used to send you the results of the survey and the outcome of the project. Your email will not be shared with anyone else and will be stored securely by Care4BrittleBones.

If you know of other adults with OI, please do pass on the survey to them to complete as well.

Thank you again for completing this survey before 31 January 2026.

Many thanks!
The Adult Health 4 OI Project team
A) Tell us a little bit about yourself

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* 1. How old are you? (you have to be over 16 to complete this questionnaire).

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* 2. What is your experience of OI

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* 3. Which country do you live in?

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* 4. Which part of the country do you live in (not where you may work)

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* 5. What is your sex assigned at birth?

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* 6. What is your current gender identity?

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* 7. Select the option that best describes your OI?

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* 8. Has your doctor diagnosed you with a specific type of OI?

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* 9. How tall are you now?

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* 10. What is your family situation (select all that apply)?

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* 11. What type of healthcare do you access (select all that apply):

B) Situation Today in your country
B1) Getting a diagnosis of OI
We want to understand how OI is being diagnosed in your country.

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* 12. Are there specialists or centers experienced with OI diagnosis? (select all that apply)

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* 13. How was your OI diagnosed in your country (select all that apply):

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* 14. Some patients are diagnosed using genetic tests, where you offered a genetic test?

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* 15. If no why not

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* 16. Do you think your usual local healthcare team have enough knowledge about OI ( 0 = no confidence, 10 = high confidence)

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* 17. Why is it important to have a diagnosis of OI in your country?

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* 18. What challenges do people with OI in your country face in getting a diagnosis of OI (select all that apply)

B2) How your OI is looked after in your country after a fracture diagnosis.
We want to better understand how OI is cared for by your local healthcare system so we can see where the strengths are and where the gaps are. To do this we are going to ask about your last broken bone and what happened.

B2a) Diagnosing the broken bone.
This section is about how your last broken bone was diagnosed. Can you tell us about the last ‘big’ bone you have broken.

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* 19. Which part of the body was it:

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* 20. How old were you when this happened?

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* 21. Where were you first treated?

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* 22. How much did your first treating medical team know about OI?

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* 23. Did you have to educate the people you saw? (select all that apply)

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* 24. Did you need to be moved to another healthcare provider because of your fracture

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* 25. What tools or resources did you have to help you educate your local healthcare team?

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* 26. Who diagnosed your fracture ?

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* 27. How long did it take for your fracture to be diagnosed (in hours)?

B2b) Care you received after your fracture:
Now we have some questions about the care you received after your fracture:

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* 28. Fractures are painful, how well was your pain controlled?

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* 29. If your pain control was not good, can you describe why that was? Check all that apply...

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* 30. Did you have an operation

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* 31. If no, why not? Check all that apply...

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* 32. If you had an operation did you have

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* 33. Did you have any physiotherapy or rehabilitation after your fracture (select all that apply)?

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* 34. Did you have medical treatment after your broken bone

B2c) Care outside of broken bones
We want to better understand your experience of OI care outside of broken bones

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* 35. OI can affect how you walk and get around, do you have problems with walking? What aids do you sometimes or always use when outdoors

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* 36. What about your access to public transport?

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* 37. Are people with your severity or type of OI able to drive a car in your country?

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* 38. What challenges did you face getting your mobility assessed (select all)

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* 39. What challenges did you face getting the mobility aid you need? (select all)

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* 40. As OI affects your bone, does your healthcare team discuss

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* 41. Which types of healthcare professionals do you routinely see for your bones

B2d) Types of routine care
We now want to know what types of care are available in your country for routine care:

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* 42. What assessments and treatments are available for you if you have a bone fracture and need surgery? (select all)

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* 43. What are the barriers do you have to accessing your OI expert doctor/ team?

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* 44. How far is it to reach them (miles)

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* 45. How long does it take to travel (hours)

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* 46. How expensive is it?
Include amount and currency

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* 47. How long is the waiting time for routine appointments (in months)?

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* 48. How long is the waiting time for urgent appointments (months)?

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* 49. Any other barriers?

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* 50. What assessments and treatments are available for you for supporting mobility, every day fitness and independent living? (select all)

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* 51. Are there any gaps or limitations in current services for broken bones and mobility? (free text)

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* 52. OI can also affect other parts of the body, in the last 2 years what care have you had for your...:

  No care Assessment only Assessment and Treatment
Dental
Hearing
Heart issues
Breathing issues
Stomach/ bowel issues
Pain control
Tiredness
Anxiety / depression

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* 53. OI sometimes needs care from other specialists, have you been seen by these specialists for your OI

  yes - public yes - private no don't know
Lung/ respiratory specialist
Heart doctor
Spine surgeon
Hearing doctor
Eye doctor
B2e) Employment and education
Many people living with rare diseases, like OI, often face financial challenges that limit their access to healthcare. That’s why it’s so important to support opportunities for education and employment—key factors in improving quality of life.

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* 54. Are you currently

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* 55. Please describe what help you receive as worker or student (select all that apply)

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* 56. What are the main barriers you face at school or getting or staying in work? Select all that apply...

C) Infrastructure & Resources for Adult OI Health and Healthcare in your Country

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* 57. Which hospitals, clinics, or experts in your country are known for adult OI care? Can you name the hospitals, clinkcs or experts in your country who are known for adult OI Care?

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* 58. Do you know of any of these that can help with your OI care? Select all that apply...

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* 59. What tools have you used to educate yourself about OI? Select all that apply...

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* 60. Have you accessed any tools provided by other OI support groups? If none, please write "none". If yes, write which ones

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* 61. How helpful did you find them overall (0 not helpful – 10 very helpful)

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* 62. What else would have helped you in getting better healthcare?

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* 63. How well are children with OI supported when they have to move to adult services? (0 no support– 10 very supported)

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* 64. What works well for transition from child to adult care in your country?

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* 65. What needs improvement for transition from child to adult care in your country

D) Good Service for adults with OI in your Country

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* 66. What do you think would be a good OI service for adults in your country. Please indicate the Healthcare Domains most important for you.

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* 67. Can you write down anything else you think is important for caring for adults living with OI in your country?

E) Next steps for Improving health and healthcare for adults with OI in your Country

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* 68. For diagnosis: What should improve?

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* 69. For fracture management: What should be available that is not today?

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* 70. For mobility management: What should be available that is not today?

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* 71. How should mental health, lifestyle, and social wellbeing be supported?

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* 72. What other types of care: What services or supports are missing now but essential in the future?

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* 73. What role could patient organisations and healthcare systems play?

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* 74. What other educational resources would you like in your country for you?

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* 75. What other educational resources would you like in your country for your doctors?

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* 76. What are the next steps for improving healthcare for adults with OI?

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* 77. Now you have answered these questions, we want to understand what you think is most important for your country. What are the most urgent gaps to address? Select 5 and rank them in priority. (Priority 1 = highest priority.)

  Priority 1 Priority 2 Priority 3 Priority 4 Priority 5
Diagnosis
Fracture diagnosis/ fracture care
Other Bone health & DXA
Mobility & rehabilitation
Dental & hearing
Heart and lung
Pain & fatigue
Mental health
Employment & education
Transition
OI Treatment for Adults
Other: ___

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* 78. Can you list the changes we could achieve in the next year?

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* 79. What resources or international collaborations could help? Check all that apply...

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* 80. Is there anything else you'd like to add that we haven't covered?

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* 81. F) Closing

This Questionnaire is anonymous.

Optional: If you wish to be informed about this project or want to continue to be involved you can leave your contact details here. You can also participate and be kept in the loop you can also send an email to dagmar.mekking@care4brittlebones.org separately to keep your input in this survey anonymous.

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* 82. ONLY if you want to be updated or involved, provide your details here.

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* 83. ONLY if you want to be updated or involved, provide your email here

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* 84. ONLY if you want to be contacted also via whatsapp, provide your phone number here (including Country Code)

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