The IMPACT Survey: the humanistic impact of osteogenesis imperfecta in adults.

ABSTRACT:

Background

The IMPACT Survey explored the humanistic, clinical, and economic burden of osteogenesis imperfecta (OI) on individuals with OI, their families, caregivers, and wider society. Two previous publications report research methodology, initial insights of the survey, and cost of illness of OI. Here, we present data on the impact of OI on the quality of life (QoL) of adults with OI and explore potential drivers of this impact.

Methods

The IMPACT Survey was an international mixed methods online survey in eight languages (fielded July-September 2021), aimed at adults (aged ≥ 18 years) or adolescents (aged 12-17 years) with OI, caregivers (with or without OI) of individuals with OI, and other close relatives. Survey domains included demographics, socioeconomic factors, cli

SUBMITTER: van Welzenis T 

PROVIDER: S-EPMC11605868 | biostudies-literature | 2024 Nov

REPOSITORIES: biostudies-literature