Self-perceived burden and mental health outcomes in adults with osteogenesis imperfecta

Osteogenesis Imperfecta (OI) is a rare disorder causing bone fragility, pain, and functional impairment that causes substantial psychosocial burden. This study examined how self-perceived burden (SPB), or distress from feelings of dependence on caregivers, relates to depression, anxiety, and suicidality in adults with OI. A total of 208 adults ( M age = 42.9, predominately White and female) with OI were recruited to complete a cross-sectional survey assessing SPB, psychological symptoms, health, and sociodemographics. Results indicated that SPB was significantly higher among younger individuals, those not living with a partner, those living with adult family members, lower-income groups, and individuals unable to work due to health-related concerns. SPB was positively associated with pain, disability, and worse global health scores, and independently predicted depressive and anxiety symptoms, but not suicidality. Findings suggest SPB contributes to mental health burden in OI and that addressing it may improve psychological outcomes and quality of life.