PDF(Pubmed)
Abstract：
Persons diagnosed with serious chronic illnesses and their caretakers experience multiple types of financial costs that strain their income and generate financial distress. Many turn to medical crowdfunding (MCF) to mitigate the harms of these costs on their health and quality of life.
This scoping review aims to summarize the research on MCF for persons diagnosed with serious chronic illness regarding study designs and methods; the responsible conduct of research practices; and study foci as they relate to stress, stress appraisals, and the coping processes.
This review was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. Eligible studies were conducted in countries designated as high income by the World Bank and focused on beneficiaries diagnosed with serious chronic illness. The findings of the included studies were summarized as they related to the key concepts in a conceptual framework derived from an established stress, appraisal, and coping framework and a conceptual model of financial toxicity in pediatric oncology.
Overall, 26 studies were eligible for inclusion in the review. The main findings included a lack of integration of qualitative and quantitative approaches and the inconsistent reporting of the responsible conduct of research practices. The included studies focused on financial stressors that contributed to financial burden, such as out-of-pocket payments of medical bills, basic living expenses, medical travel expenses, and lost income owing to illness-related work disruptions. Few studies addressed stress appraisals as threatening or the adequacy of available financial resources. When mentioned, appraisals related to the global financial struggle during the COVID-19 pandemic or the capacity of social network members to donate funds. The consequences of MCF included the receipt of 3 forms of social support (tangible, informational, and emotional), privacy loss, embarrassment, and the propagation of scientifically unsupported information. Studies found that friends and family tended to manage MCF campaigns. Although most of the studies (21/26, 81%) focused on monetary outcomes, a few (5/26, 19%) concentrated on peoples\' experiences with MCF.
The identified methodological gaps highlight the need for more robust and reproducible approaches to using the copious data available on public MCF platforms. The integration of quantitative and qualitative methods will allow for nuanced explorations of the MCF experience. A more consistent elaboration of strategies to promote the responsible conduct of research is warranted to minimize risk to populations that are vulnerable and express concerns regarding the loss of privacy. Finally, an examination of the unanticipated consequences of MCF is critical for the development of future interventions to optimize existing supports while providing needed supports, financial and nonfinancial, that are lacking.
This scoping review aims to summarize the research on MCF for persons diagnosed with serious chronic illness regarding study designs and methods; the responsible conduct of research practices; and study foci as they relate to stress, stress appraisals, and the coping processes.
This review was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. Eligible studies were conducted in countries designated as high income by the World Bank and focused on beneficiaries diagnosed with serious chronic illness. The findings of the included studies were summarized as they related to the key concepts in a conceptual framework derived from an established stress, appraisal, and coping framework and a conceptual model of financial toxicity in pediatric oncology.
Overall, 26 studies were eligible for inclusion in the review. The main findings included a lack of integration of qualitative and quantitative approaches and the inconsistent reporting of the responsible conduct of research practices. The included studies focused on financial stressors that contributed to financial burden, such as out-of-pocket payments of medical bills, basic living expenses, medical travel expenses, and lost income owing to illness-related work disruptions. Few studies addressed stress appraisals as threatening or the adequacy of available financial resources. When mentioned, appraisals related to the global financial struggle during the COVID-19 pandemic or the capacity of social network members to donate funds. The consequences of MCF included the receipt of 3 forms of social support (tangible, informational, and emotional), privacy loss, embarrassment, and the propagation of scientifically unsupported information. Studies found that friends and family tended to manage MCF campaigns. Although most of the studies (21/26, 81%) focused on monetary outcomes, a few (5/26, 19%) concentrated on peoples\' experiences with MCF.
The identified methodological gaps highlight the need for more robust and reproducible approaches to using the copious data available on public MCF platforms. The integration of quantitative and qualitative methods will allow for nuanced explorations of the MCF experience. A more consistent elaboration of strategies to promote the responsible conduct of research is warranted to minimize risk to populations that are vulnerable and express concerns regarding the loss of privacy. Finally, an examination of the unanticipated consequences of MCF is critical for the development of future interventions to optimize existing supports while providing needed supports, financial and nonfinancial, that are lacking.
摘要：
背景：被诊断患有严重慢性疾病的人及其看护者经历了多种类型的财务成本，这些成本使他们的收入紧张并产生财务困境。许多人转向医疗众筹（MCF），以减轻这些成本对他们的健康和生活质量的危害。
目的：本范围综述旨在总结被诊断患有严重慢性病的人的MCF研究，包括研究设计和方法；研究实践的负责任行为；以及与压力相关的研究重点，压力评估，和应对过程。
方法：本综述按照PRISMA（系统评价和Meta分析的首选报告项目）和PRISMA-ScR（系统评价和Meta分析扩展的首选报告项目）指南进行。在世界银行指定为高收入国家进行了符合条件的研究，重点是被诊断患有严重慢性病的受益人。对纳入研究的结果进行了总结，因为它们与概念框架中的关键概念相关，这些概念框架源于既定的压力，评估,儿科肿瘤学金融毒性的应对框架和概念模型。
结果：总体而言，26项研究有资格纳入审查。主要调查结果包括缺乏定性和定量方法的整合，以及对负责任的研究实践行为的报告不一致。纳入的研究侧重于导致经济负担的财务压力源，例如自付医疗费用，基本生活费用,医疗差旅费,以及由于与疾病有关的工作中断而导致的收入损失。很少有研究将压力评估视为威胁或可用财政资源的充足性。当提到,与COVID-19大流行期间全球金融斗争或社交网络成员捐赠资金能力有关的评估。MCF的后果包括获得3种形式的社会支持(有形，信息性,和情感)，隐私丢失,尴尬,以及科学上不支持的信息的传播。研究发现，朋友和家人倾向于管理MCF活动。尽管大多数研究(21/26，81%)关注的是货币结果，少数人(5/26，19%)集中在人们对MCF的体验上。
结论：确定的方法学差距突出了需要更可靠和可重复的方法来使用公共MCF平台上可用的大量数据。定量和定性方法的整合将允许对MCF经验进行细微差别的探索。有必要更加一致地制定战略，以促进负责任的研究行为，以最大程度地减少易受伤害人群的风险，并对失去隐私表示担忧。最后,对MCF的意外后果的审查对于未来干预措施的发展至关重要，以优化现有支持，同时提供所需的支持，金融和非金融，缺乏的。
目的：本范围综述旨在总结被诊断患有严重慢性病的人的MCF研究，包括研究设计和方法；研究实践的负责任行为；以及与压力相关的研究重点，压力评估，和应对过程。
方法：本综述按照PRISMA（系统评价和Meta分析的首选报告项目）和PRISMA-ScR（系统评价和Meta分析扩展的首选报告项目）指南进行。在世界银行指定为高收入国家进行了符合条件的研究，重点是被诊断患有严重慢性病的受益人。对纳入研究的结果进行了总结，因为它们与概念框架中的关键概念相关，这些概念框架源于既定的压力，评估,儿科肿瘤学金融毒性的应对框架和概念模型。
结果：总体而言，26项研究有资格纳入审查。主要调查结果包括缺乏定性和定量方法的整合，以及对负责任的研究实践行为的报告不一致。纳入的研究侧重于导致经济负担的财务压力源，例如自付医疗费用，基本生活费用,医疗差旅费,以及由于与疾病有关的工作中断而导致的收入损失。很少有研究将压力评估视为威胁或可用财政资源的充足性。当提到,与COVID-19大流行期间全球金融斗争或社交网络成员捐赠资金能力有关的评估。MCF的后果包括获得3种形式的社会支持(有形，信息性,和情感)，隐私丢失,尴尬,以及科学上不支持的信息的传播。研究发现，朋友和家人倾向于管理MCF活动。尽管大多数研究(21/26，81%)关注的是货币结果，少数人(5/26，19%)集中在人们对MCF的体验上。
结论：确定的方法学差距突出了需要更可靠和可重复的方法来使用公共MCF平台上可用的大量数据。定量和定性方法的整合将允许对MCF经验进行细微差别的探索。有必要更加一致地制定战略，以促进负责任的研究行为，以最大程度地减少易受伤害人群的风险，并对失去隐私表示担忧。最后,对MCF的意外后果的审查对于未来干预措施的发展至关重要，以优化现有支持，同时提供所需的支持，金融和非金融，缺乏的。
