Publications by authors named "Taco van Welzenis"
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.
View Article and Find Full Text PDFBackground: The IMPACT survey aimed to elucidate the humanistic, clinical and economic burden of osteogenesis imperfecta (OI) on individuals with OI, their families, caregivers and wider society. Research methodology, demographics and initial insights from the survey have been previously reported. The cost of illness (healthcare resource use, productivity loss, out-of-pocket spending) and drivers of the economic impact of OI are reported here.
View Article and Find Full Text PDFArticle Synopsis
- Osteogenesis imperfecta (OI) is a rare genetic disorder that significantly impacts the quality of life for those affected, leading to increased healthcare needs and economic burdens for individuals, families, and society.
- The IMPACT survey aimed to gather comprehensive data on various aspects of OI, including the humanistic, clinical, and economic impacts, and included responses from adults, adolescents, caregivers, and close relatives across eight languages.
- Results revealed that pain was the most common symptom reported, alongside notable issues such as fatigue, scoliosis, and mental health problems, emphasizing the multifaceted challenges faced by individuals with OI.
Background: Osteogenesis imperfecta (OI) is a rare heritable connective tissue disorder primarily characterised by skeletal deformity and fragility, and an array of secondary features. The purpose of this review was to capture and quantify the published evidence relating specifically to the clinical, humanistic, and economic impact of OI on individuals, their families, and wider society.
Methods: A systematic scoping review of 11 databases (MEDLINE, MEDLINE in-progress, EMBASE, CENTRAL, PsycINFO, NHS EED, CEA Registry, PEDE, ScHARRHUd, Orphanet and Google Scholar), supplemented by hand searches of grey literature, was conducted to identify OI literature published 1st January 1995-18th December 2021.