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

ABSTRACT:

Introduction

The IMPACT Survey ("IMPACT") investigated the humanistic, clinical, and economic impact of osteogenesis imperfecta (OI) on affected individuals, caregivers, and the broader community. Prior publications reported the methodology, initial findings, and economic and humanistic impacts on adults with OI. Here, data is presented on the humanistic impact of OI on caregivers to explore how caring for an individual with OI impacts their quality of life (QoL), and any drivers of impact. We hypothesise that caring for an individual with OI will impact the QoL of caregivers.

Methods

IMPACT, fielded July through September 2021 in eight languages, targeted adults and adolescents with OI, close relatives, and caregivers with or without OI. The survey covered demographics, soc

SUBMITTER: Westerheim I 

PROVIDER: S-EPMC12579686 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature