Powered by OpenAIRE graph
Found an issue? Give us feedback
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/ https://doi.org/10.2...arrow_drop_down
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/
https://doi.org/10.21203/rs.3....
Article . 2024 . Peer-reviewed
License: CC BY
Data sources: Crossref
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/
BMC Public Health
Article . 2024 . Peer-reviewed
License: CC BY
Data sources: Crossref
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/
PubMed Central
Other literature type . 2024
License: CC BY
Data sources: PubMed Central
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/
BMC Public Health
Article . 2024
Data sources: DOAJ
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/
versions View all 6 versions
addClaim

This Research product is the result of merged Research products in OpenAIRE.

You have already added 0 works in your ORCID record related to the merged Research product.

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

Authors: van Welzenis, Taco; Westerheim, Ingunn; Hart, Tracy; Wekre, Lena Lande; Semler, Oliver; Rauch, Frank; Dewavrin, Laetitia; +3 Authors

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

Abstract

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, clinical characteristics, treatment patterns, QoL, and health economics. We conducted a descriptive analysis of the QoL data, as well as exploratory regression analyses to identify independent associations between patient characteristics, and the impact on QoL in adults with OI (henceforth called drivers). Results: Between 49–84% of the 1,440 adults with OI who participated in the survey reported that OI impacted their QoL across physical, socioeconomic and mental well-being domains. For instance, 84% of adults reported an impact of OI on the types of leisure activities they could do, and 74% on the type of job they could do. Drivers of impact on QoL included having more severe OI and a higher frequency of fractures. Additionally, between 31–97% reported worrying about different aspects of their lives due to their OI, such as mobility loss, future fractures and ageing. Conclusion: IMPACT provides insights into the humanistic burden of OI on adults, revealing that OI has a substantial impact on the QoL of adults. OI severity and fracture frequency were consistently identified as drivers of impact on QoL across all domains. Understanding these drivers may aid in identifying areas for targeted interventions, such as fracture prevention.

Keywords

Male, Adult, Patient-reported outcomes, Adolescent, Research, Burden of disease, Surveys and Questionnaires [MeSH] ; Cost of Illness [MeSH] ; Aged [MeSH] ; Quality of Life/psychology [MeSH] ; Humanistic burden ; Osteogenesis Imperfecta/psychology [MeSH] ; Socioeconomic Factors [MeSH] ; Health worries ; Self-reported disease severity ; Male [MeSH] ; Fatigue ; Pain ; Child [MeSH] ; Adolescent [MeSH] ; Burden of disease ; Female [MeSH] ; Fractures ; Patient-reported outcomes ; Adult [MeSH] ; Humans [MeSH] ; Middle Aged [MeSH] ; Quality of life ; Research ; Young Adult [MeSH] ; Osteogenesis imperfecta ; Caregivers/psychology [MeSH] ; Caregivers/statistics ; Survey, Osteogenesis Imperfecta, Middle Aged, Young Adult, Cost of Illness, Caregivers, Socioeconomic Factors, Surveys and Questionnaires, Quality of Life, Humans, Osteogenesis imperfecta, Female, Public aspects of medicine, RA1-1270, Survey, Child, Fractures, Humanistic burden, Aged

  • BIP!
    Impact byBIP!
    selected citations
    These citations are derived from selected sources.
    This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    3
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Top 10%
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Average
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Average
Powered by OpenAIRE graph
Found an issue? Give us feedback
selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
3
Top 10%
Average
Average
Green
gold
Related to Research communities