The IMPACT Survey: The Economic Impact of Caring for an Individual with Osteogenesis Imperfecta

The IMPACT Survey ("IMPACT") investigated the economic, clinical, and humanistic challenges of osteogenesis imperfecta (OI) on affected individuals, caregivers, and the broader community. Prior publications detail the methodology, initial findings, healthcare expenditures, and quality of life (QoL) impact on adults with OI. Here, data is presented on the productivity and finances of caregivers and any predictors of impact. We hypothesise that caring for an individual with OI will impact the productivity and finances of caregivers. IMPACT, fielded July through September 2021 in eight languages, targeted adults and adolescents with OI, caregivers (with or without OI), and close relatives. Survey items covered demographics, socioeconomic factors, clinical characteristics, treatment patterns, QoL, and health economics. We performed descriptive analyses of caregivers' productivity and finances and exploratory regression analyses to identify independent associations between care recipient and caregiver characteristics ("predictors"), and their economic impact on caregivers. Of 528 caregivers (without OI) with one care recipient, 64% were in paid employment. Of these, 50% reported missing workdays in the preceding 4 weeks (mean 1.9 days). Caregivers reported impacted finances, spending a mean total of €209 out of pocket (OOP) with the most spent on travel to medical appointments (mean €83) and medicine (mean €46) in the preceding 4 weeks. Caregiver spending varied across regions. Caregivers in the USA spent more in 4 weeks (mean €334) than caregivers in EU4 (France, Germany, Italy, and Spain) and UK (mean €163) or Nordic countries (mean €33). Predictors of productivity and OOP spending included caregiver age, sex and employment status, care recipient age, and various signs, symptoms, and events. Our results suggest that caring for an individual with OI may impact caregivers' productivity and finances. The degree of impact may be predicted by caregiver and care recipient age, fracture frequency, and dental problems. The IMPACT Survey looked at how caring for someone with osteogenesis imperfecta affects caregivers' work and finances. It aimed to understand the challenges caregivers face and what factors might make the experience of the caregivers worse. The survey was done in 2021 and was open to caregivers (both with and without osteogenesis imperfecta), as well as people with osteogenesis imperfecta. It asked about health, daily life, treatments, and the costs of care. The survey also looked at how often caregivers missed work and how much they spent on healthcare costs like travel and medication. Of 528 caregivers, 64% were employed. Half of them missed work in the last month, averaging 1.9 days off in 4 weeks. Caregivers reported spending an average of €209 on healthcare in the previous 4 weeks, with the most spent on travel to medical appointments (€83) and medicine (€46). Caregiver spending varied by country, with those in the USA spending more (€334) compared with Europe and Nordic countries (€33–163). The survey found that factors like the caregiver's age, employment status, and the person they care for (e.g. their age and how often they fracture) impacted how much their work and finances were affected. The results show that caregiving for someone with osteogenesis imperfecta can impact both a caregiver's job and finances.