Living With Osteogenesis IMPerfecta: UnderstAnding Experiences Based On Community InsighT and Evidence Survey, the IMPACT Survey
What is the IMPACT survey?
In 2021, the Osteogenesis Imperfecta Foundation (OIF), the Osteogenesis Imperfecta Federation Europe (OIFE), and Mereo BioPharma collaborated closely to launch the IMPACT Survey. The goal of this project was to capture and quantify the real impact OI has on the lives of people with OI, their families, and caregivers. We were thrilled that more than 2,200 OI community members from 66 countries participated in this survey!
The survey was based on evidence gaps around:
- Clinical impact of OI on affected individuals
- Humanistic impact on individuals, their families and caregivers
- Economic impact on individuals and wider society
The IMPACT survey is now closed. Thank you to all participants who made this possible.
What were the target groups?
The survey was developed for the following primary target groups:
- Adults with OI (over 17 years old)
- Parents (without OI) of children with OI
- Parents (with OI) of children with OI
- Adolescents with OI (12 – 17 years old)
In addition to the target groups above, there were also a substantial number of responses from
- Parents of adults with OI
- Close relatives of people with OI
There were different questions based on which target group you belong to. Adults with OI who had children with OI, could answer both on behalf of themselves and their children.
Geographic distribution of respondents
The collaborative survey development allowed members across OI communities and geographies to participate.
What will the data be used for and how will it be stored?
The IMPACT Survey provides a large global dataset describing the experiences of the OI community. The results of this survey are being used to improve healthcare services and potential future treatments for OI.
The data was gathered on a confidential and anonymous basis, with Non-Personally Identifiable Information (Non-PII) . It will be securely stored by Wickenstones according to Data Protection Regulations. The data is now being analyzed according to the plan developed by the Steering Committee, to prepare four proposed central publications on the impact of OI in peer-reviewed, scientific journals.
What data has been published? What are the findings?
So far, the first article “The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review” was published in Orphanet Journal of Rare Diseases in February 2023. The purpose of this review was to capture and quantify the published evidence relating specifically to the clinical, humanistic, and economic impact of OI on individuals, their families, and society.
The review suggests that there is limited data regarding health concerns beyond bone health and how these concerns may impact health-related quality of life, in particular that of adult men and other family members.
The four remaining articles will be published in 2023 and 2024.
The graphic below describes the most common health conditions in adults with OI (of the past 12-months prior to answering). Pain, fatigue and soft tissue are the most common symptoms, while fractures are in 13th place for the adult population.
We have been given permission to share this graphic.
