Frank Rauch, Taco van Welzenis, Lena Lande Wekre, Cathleen Raggio, Oliver Semler, Ingunn Westerheim, Heather Mulhall, Melanie Anderson, Samantha Prince, Tracy Hart
{"title":"影响调查：照顾成骨不全症患者的经济影响。","authors":"Frank Rauch, Taco van Welzenis, Lena Lande Wekre, Cathleen Raggio, Oliver Semler, Ingunn Westerheim, Heather Mulhall, Melanie Anderson, Samantha Prince, Tracy Hart","doi":"10.1007/s12325-025-03373-7","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":7482,"journal":{"name":"Advances in Therapy","volume":" ","pages":""},"PeriodicalIF":4.0000,"publicationDate":"2025-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"The IMPACT Survey: The Economic Impact of Caring for an Individual with Osteogenesis Imperfecta.\",\"authors\":\"Frank Rauch, Taco van Welzenis, Lena Lande Wekre, Cathleen Raggio, Oliver Semler, Ingunn Westerheim, Heather Mulhall, Melanie Anderson, Samantha Prince, Tracy Hart\",\"doi\":\"10.1007/s12325-025-03373-7\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>\",\"PeriodicalId\":7482,\"journal\":{\"name\":\"Advances in Therapy\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":4.0000,\"publicationDate\":\"2025-09-23\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Advances in Therapy\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s12325-025-03373-7\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"MEDICINE, RESEARCH & EXPERIMENTAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Advances in Therapy","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s12325-025-03373-7","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"MEDICINE, RESEARCH & EXPERIMENTAL","Score":null,"Total":0}
The IMPACT Survey: The Economic Impact of Caring for an Individual with Osteogenesis Imperfecta.
Introduction: 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.
Methods: 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.
Results: 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.
Conclusion: 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.
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.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
