Perceived oral care needs and concerns of individuals with osteogenesis imperfecta

Introduction Osteogenesis imperfecta (OI) is a genetic condition most commonly caused by pathogenic variants in the genes encoding type I collagen which is the major protein of bone. Bone fractures are an important feature but it is also associated with dentinogenesis imperfecta (DI) and other dental anomalies.Aim To investigate the experiences of people living with OI related to their oral care. Method An anonymous survey developed for the Brittle Bone Society (BBS) was distributed in the United Kingdom and Ireland and was available online for three months to all members of the BBS via their website and social media platforms. Both parental reports of children with OI and adults living with OI were invited to participate.Results Of the 110 respondents, 69% identified as female (n = 76), 28% (n = 31) male, and 3% (n= 3) non-binary. The average age group was 26-45 years-old (42%; n = 46); with 21% (n = 23) below 16-years-old. In total, 45% self-reported mild OI (n = 49), 30% (n= 33) moderate, 21% (23) severe and 5% (n = 5) were unsure. Additionally, 44% (n = 48) self-reported DI, while 70% (n = 77) experienced dental problems related to OI. Concerns included appearance and bite issues. Access challenges were linked to OI severity.Conclusion Dentists need to be more aware of the effects of both DI and bisphosphonates in relation to treatment to improve care to individuals with OI, and more research is needed in this area.