Won Paul, Celie Karel-Bart, Rutter Cindy, Gillenwater T Justin, Yenikomshian Haig A
Keck School of Medicine, University of Southern California, Los Angeles, CA 90033, USA.
Uehiro Center for Practical Ethics, University of Oxford, Oxford OX1 1PT, UK.
Eur Burn J. 2023;4(4):363-372. doi: 10.3390/ebj4040037.
Disability-adjusted life years (DALY) have a ubiquitous presence in academic global health, including attempts to understand the global burden of burn injuries.
The present scoping review aimed to examine whether disability weights (DWs) were informed by burn patient perspectives and secondarily to determine whether literature indicates which of the three most common philosophical models of disability best aligns with burn patient experiences.
A review of six databases was conducted and The Critical Appraisal Skills Program (CASP) checklist was utilized.
Out of a total of 764 articles, zero studies solicited patient perspectives of DWs. Four articles contained data that could be extrapolated to patient perspectives on disability. All articles utilized semi-structured interviews of burn survivors and reported thematic elements including return to work, self-image, and social integration. Patients reported similar themes that burn injuries were disabling injuries and instrumentally detrimental, with modulation based on the patient's social circumstances.
This scoping review highlights a significant gap in literature. First, no studies were found directly investigating burn patient perspectives on burn DWs. Current DWs have been derived from expert opinions with limited input from patients. Second, the limited primary patient data gleaned from this review suggest patients consider their injuries as instrumentally detrimental, which aligns most closely with the welfarist view of disability. More explicit investigations into the philosophical model of disability best aligning with burn patient experiences are needed to ground the health economics of burns in sound theory.
伤残调整生命年（DALY）在全球卫生学术领域广泛存在，包括用于理解烧伤伤害的全球负担。
本范围综述旨在研究伤残权重（DWs）是否基于烧伤患者的观点得出，其次确定文献是否表明三种最常见的残疾哲学模型中哪一种与烧伤患者的经历最相符。
对六个数据库进行了检索，并使用了关键评估技能计划（CASP）清单。
在总共764篇文章中，没有研究征求患者对伤残权重的看法。有四篇文章包含的数据可外推至患者对残疾的看法。所有文章都采用了对烧伤幸存者的半结构化访谈，并报告了包括重返工作、自我形象和社会融入等主题元素。患者报告了类似的主题，即烧伤是致残性伤害且在功能上有害，并会根据患者的社会环境而有所不同。
本范围综述突出了文献中的一个重大差距。首先，未发现有研究直接调查烧伤患者对烧伤伤残权重的看法。当前的伤残权重是从专家意见中得出的，患者的参与有限。其次，从本次综述中收集到的有限的主要患者数据表明，患者认为他们的伤害在功能上是有害的，这与残疾的福利主义观点最为相符。需要对与烧伤患者经历最相符的残疾哲学模型进行更明确的研究，以便将烧伤的卫生经济学建立在可靠的理论基础上。
