The IMPACT Survey: The Humanistic Impact of Caring for an Individual with Osteogenesis Imperfecta.
Academic Article
Overview
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, 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. RESULTS: Of 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. CONCLUSION: Our 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.
