Ingunn Westerheim, Frank Rauch, Tracy Hart, Lena Lande Wekre, Taco van Welzenis, Cathleen Raggio, Heather Mulhall, Alysia Battersby, Samantha Prince, Oliver Semler
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引用次数: 0
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.
期刊介绍：
Advances in Therapy is an international, peer reviewed, rapid-publication (peer review in 2 weeks, published 3–4 weeks from acceptance) journal dedicated to the publication of high-quality clinical (all phases), observational, real-world, and health outcomes research around the discovery, development, and use of therapeutics and interventions (including devices) across all therapeutic areas. Studies relating to diagnostics and diagnosis, pharmacoeconomics, public health, epidemiology, quality of life, and patient care, management, and education are also encouraged.
The journal is of interest to a broad audience of healthcare professionals and publishes original research, reviews, communications and letters. The journal is read by a global audience and receives submissions from all over the world. Advances in Therapy will consider all scientifically sound research be it positive, confirmatory or negative data. Submissions are welcomed whether they relate to an international and/or a country-specific audience, something that is crucially important when researchers are trying to target more specific patient populations. This inclusive approach allows the journal to assist in the dissemination of all scientifically and ethically sound research.
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