The Direct and Indirect Financial Costs Sustained by Parents of Children with Osteogenesis Imperfecta

Abstract

Osteogenesis Imperfecta (OI), also known as brittle bone disease, is a rare genetic condition characterized by increased bone fragility. The financial costs of caring for a child with a rare condition can be a significantsource of stress for families. As such, the financial costs of care are a concern to the clinicians who care for these families. However, the financial impact of caring for a child with OI is under-reported. A secondary analysis was conducted on data collected from a qualitative study in nursing. The aim was to offer preliminary insights into the financial impacts of caring for a child living with OI. Participants reported many direct out-of-pocket costs, which presented with reimbursement barriers. Other indirect costs resulted from missed work, career changes, or workforce departures. Policy and clinical implications include optimizing accessibility of supportive childcare policies, simplifying healthcare reimbursements, and regularly assessing families’ knowledge of available financial supports.