The IMPACT Survey: The Economic Impact of Caring for an Individual with Osteogenesis Imperfecta.

ABSTRACT:

Introduction

The IMPACT Survey ("IMPACT") investigated the economic, clinical, and humanistic challenges of osteogenesis imperfecta (OI) on affected individuals, caregivers, and the broader community. Prior publications detail the methodology, initial findings, healthcare expenditures, and quality of life (QoL) impact on adults with OI. Here, data is presented on the productivity and finances of caregivers and any predictors of impact. We hypothesise that caring for an individual with OI will impact the productivity and finances of caregivers.

Methods

IMPACT, fielded July through September 2021 in eight languages, targeted adults and adolescents with OI, caregivers (with or without OI), and close relatives. Survey items covered demographics, socioeconomic factors, clinical c

SUBMITTER: Rauch F 

PROVIDER: S-EPMC12579707 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature