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!
To date it is the largest global study examining the multifaceted impact of osteogenesis imperfecta (OI) on individuals’ lives. Its findings have been disseminated through various publications, offering valuable insights into the humanistic, economic, and clinical challenges faced by those with OI.
The most recent article to be published based off the survey is titled The IMPACT Survey: the humanistic impact of osteogenesis imperfecta in adults and presents data on the impact of OI on the quality of life of adults with OI and explores potential drivers of this impact.
Some of the key findings were:
- The areas of life most commonly impacted by OI were job types (74%), social life (72%), and types of leisure activities respondents could pursue (84%).
- Severe self-reported OI and higher fracture frequency were consistently identified as drivers of OI’s impact on quality of life and OI-linked worries and concerns.
- 66% of adults reported that OI impacts their mental health. Mental health problems were commonly reported by those who experienced any fractures (73%) or vertebral fractures (84%) in the past 12 months.
- Over half of adults worried a lot about mobility loss (53%), future fractures (48%), and aging (48%) with OI.
We want to take a moment to thank everyone who participated in this survey. Your input has helped bring attention to these important issues and share the findings with the wider community. As you know, supporting research is an important part of the OI Foundation’s mission and we need volunteers to help advance the scientific understanding of OI so that more and better treatments can be made available to the OI community.
Learn more at https://tinyurl.com/impactadultsOI.
