Assessing Access to Orthopaedic Care for Patients With Osteogenesis Imperfecta

Background. Osteogenesis Imperfecta (OI) is a rare disorder caused by variations in collagen. Clinical manifestations include multiple fractures, short stature, scoliosis, blue sclera, hearing loss, and opalescent teeth. Patients often need many different medical providers frequently, which may place financial burdens on families. This study sought to identify and understand barriers to care for children with OI. Methods. We utilized an Institutional Review Board (IRB)-approved survey for primary caregivers of children with OI. Questions included demographic data, type of health insurance, history of and reasons for insurance denials, access to multidisciplinary OI care, and travel to receive OI care. The Osteogenesis Imperfecta Foundation (OIF) emailed a survey invitation to the OI members. Results. There were 72 respondents. The median age was 8 years old. The most frequent OI subtypes were types I (37%), IV (21%), and III (16%). Thirty percent of families reported at least one primary caregiver left the workforce to care for their child’s needs. The most reported health insurance type is private (62%), 22% have both private and public insurance, 16% have public only. Fourteen percent of families reported that they declined an orthopaedic procedure for their child due to the fear of high costs and debt. Conclusion. To our knowledge, this survey is the first of its kind to investigate barriers to care for pediatric OI patients. This survey demonstrates the need for significant improvements in access to care for OI patients and their families, specifically regarding financial constraints, care coordination, and lack of access to multidisciplinary care centers.