ArticleAdvances in therapy2025
The IMPACT Survey: The Humanistic Impact of Caring for an Individual with Osteogenesis Imperfecta.
Article in Advances in therapy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
2 citing papers in PubMed.
- Parent and professional experiences of a clinical trial of prenatal and postnatal stem cell therapy for severe osteogenesis imperfecta.European journal of human genetics : EJHG · 2026Article
- Letter to the Editor Regarding: The IMPACT Survey-The Humanistic Impact of Caring for an Individual with Osteogenesis Imperfecta.Advances in therapy · 2026Article
Corrections and comments
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Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionThe 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.
methodsIMPACT, 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, socioeconomic factors, clinical characteristics, treatment patterns, QoL, and health economics. The impact of caring for an individual with OI was measured across QoL and worry domains. We performed descriptive analyses of the QoL of caregivers without OI and exploratory regression analyses to identify independent associations between caregiver and care recipient characteristics ("predictors"), and their QoL impact on caregivers.
resultsOf 528 caregivers without OI with one care recipient, across 10 areas and three domains (career and finances, social and relationships, and mental and physical well-being), 58-83% reported that caring for an individual with OI negatively impacted their QoL; 80% and 83% reported impacted mental health and time for leisure activities, respectively. Predictors of QoL impact included caregiver age, care recipient OI severity, age, and clinical signs, symptoms and events (SSEs). Additionally, 36-96% worried about their care recipients' future lives, medication access, and transition to adult care.
conclusionOur results suggest that caring for individuals with OI might have considerable impacts on QoL and worries. The level of impact may be predicted by caregiver age and care recipient OI severity, age, and clinical SSEs.
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