THE BRAIN INJURY ASSOCIATION OF AMERICA (BIAA) published a position paper that describes the state of outcomes research in the field of brain injury and identifies the factors to consider when evaluating existing studies and embarking on future outcomes research. This commentary summarizes that article by highlighting 3 major challenges for outcome measurement in brain injury rehabilitation. It also presents opportunities for improving outcomes research through improved research design, standardization of measurement tools across the continuum with utilization of national databases, and an evidence-based approach to providing care to help move brain injury rehabilitation outcome measurement in a positive direction.

脑损伤国际研究学院发表了一份立场文件，阐述了脑损伤领域的成果研究现状，并确定了在评估现有研究和着手未来成果研究时应考虑的因素。本文通过强调脑损伤康复中三个主要的结果衡量挑战来总结这篇文章。它还提供了通过改进研究设计、在利用国家数据库的过程中实现计量工具标准化以及以基于证据的方式提供护理以帮助将脑损伤康复结果计量工作推向积极方向来改进结果研究的机会。

Outcome measurement in brain injury rehabilitation has progressed. The Intergency Traumatic Brain Injury (TBI) Outcomes Workgroup recommended the use of multiple measures with sound psychometric properties that demonstrate utility with the brain injury population in TBI outcomes research. At a minimum, measures selected should assess global level of function, neuropsychological impairment, psychological status, activity limitations and participation restrictions, and perceived health-related quality of life. To accomplish this, most rehabilitation programs employ multiple measures to assess function in several domains as part of a comprehensive outcomes or program evaluation system.

颅脑损伤康复的结果测量有进展。机构间外伤性脑损伤（TBI）结果工作组建议在TBI结果研究中至少使用多种具有良好心理特性的措施来证明脑损伤人群的效用。神经性生理障碍、心理状况、活动受限和参与受限，以及感知到的与健康相关的生活质量。为了达到这一目的，大多数康复项目都采用多种方法来评估几个领域的功能，作为综合结果或方案评估系统的一部分。

Despite this progress, there remain several major challenges for outcome measurement in brain injury rehabilitation. First, there are no universally accepted outcome measurement tools. Second, outcome measurement research has not translated to better predictability of outcome. Third, most persons with brain injury do not have adequate funding to support access to the full continuum of care necessary for value-based service delivery models.

尽管取得了这一进展，但仍有几个成果衡量的主要挑战在颅脑损伤再循环中。一，没有普遍接受的成果衡量工具。二,成果计量研究没有转化为更好的成果可预测性.三，大多数脑损伤患者没有足够的资金来支持获得基于价值的服务提供模式所需的全部连续护理。

ABSENCE OF UNIVERSALLY ACCEPTED OUTCOME MEASUREMENT TOOLS USED THROUGHOUT THE INDUSTRY

整个行业缺乏普遍接受的成果衡量工具

The World Health Organization’s (WHO’s) International Classification of Functioning, Disability, and Health (ICF) provides a standard language and frame- work for the description of health and health-related states. It classifies outcome measure in 3 domains: impairment (eg, memory, attention, balance, swallowing, executive functioning), activity limitations (eg, ambulation, eating, dressing, grooming, talking), and participation restrictions (eg, working, volunteer, homemaker, parent).

世界卫生组织（WHO）关于功能、残疾和健康的国际分类（ICF）为描述健康和与健康有关的国家提供了标准的语言和框架。它将结果衡量分为三个领域：损伤（例如：记忆、注意力、平衡、吞咽、执行功能）、活动限制（例如：移动、饮食、穿衣、打扮、谈吐）、和参与限制(例如,工作,志愿者,家庭主妇,家长)。

Consistent with the language of the WHO ICF, a number of global outcome measures have been developed for the brain injury population and have demonstrated sound psychometric properties, for example, the Mayo-Portland Adaptability Inventory and the Community Integration Questionnaire. Likewise, a number of domain-specific measures have been developed, such as the Disability Rating Scale and the Supervision Rating Scale. Unfortunately, given the range of potential outcomes important to brain injury rehabilitation, particularly at the post–acute level of care (ie, activities of daily living performance, community integration, employment, life satisfaction, and quality of life), there is no agreed-upon single measure or set of measures to evaluate outcome following brain injury rehabilitation. In a survey conducted by the Brain Injury Interdisciplinary Special Interest Group (BIISIG) of the American Congress of Rehabilitation Medicine (ACRM) involving 49 community-based brain injury rehabilitation programs across 23 states, little consistency was found in terms of outcomes measurement tools used. Fifty- nine percent of programs surveyed employed the Mayo- Portland Adaptability Inventory as an outcome management tool, but more than 31% of programs reported using a “homegrown” measure. The authors concluded that the “absence of universally accepted outcome measures limits the availability of a common language and the ability to benchmark against like programs or define best practices for community-based treatment.”

与WHO ICF的语言一致的是，针对脑损伤人群制定了一些全球结果衡量标准，并显示出良好的心理测量特性，例如，梅奥-波特兰适应性清单与社区整合问卷。同样，还制定了一些针对具体领域的措施，如残疾评级表和监督评级表。遗憾的是，考虑到对脑损伤康复具有重要意义的一系列潜在结果，在治疗后的护理水平(即日常生活表现、社区融合、就业、生活满意度和生活质量等活动)，目前还没有商定的单一措施或一套措施来评估脑损伤康复后的结果。美国康复医学大会（ACRM）的大脑损伤跨学科特殊兴趣小组（BIISIG）进行了一项调查，涉及23个州的49个基于社区的大脑损伤康复项目，在所使用的结果测量工具方面几乎没有一致性。调查显示，59%的项目使用了梅奥-波特兰适应性清单作为结果管理工具，但31%以上的项目报告使用了“本土”措施。作者得出结论：“缺乏普遍接受的结果的含义——确保限制了一种通用语言的可用性，并限制了对照类似的程序或定义基于社区的治疗的做法的能力。

The Uniform Data System for Medical Rehabilitation (UDSMR), established in 1987, has positively influenced outcome measurement at the acute care level, including the required use of the Functional Independence Measure (FIM) as the primary tool for outcome measurement. More than 600 articles have been published using UDSMR instruments and data, and the research suggested that functional assessment could be developed into a science to provide the knowledge for understanding the “biology of disability,” a term that implies possible dominant (and therefore expected) response patterns to disability based on the biological, social, and environmental factors that influence outcome. The “biology of disability” concept could help clinicians distinguish patterns of expected functional limitations from unexpected functional limitations.

1987年建立的统一的医疗康复数据系统(UDSMR)，在急性护理层面上对结果进行了积极的流动测量，包括要求使用的功能指数测量(FIM)作为主要工具的结果。使用UDSMR仪器和数据发表了600多篇文章，研究表明，功能评估可以发展成一门科学，为理解“残疾的生物学”提供知识，”这一术语指的是基于生物、社会和环境因素影响结果的、可能占主导地位（因此也是预期的）的残疾模式。“残疾生物学”概念可以帮助临床医生区分预期功能限制和意外功能限制的模式。

The required use of a single tool or set of outcome measurement tools, consistent with the WHO ICF, from the point of discharge in an acute setting through the post-acute continuum of care, would support the understanding of the biology of disability following brain injury. OutcomesInfo, a Web-based database system developed through National Institutes of Health (NIH) Small Business Technology Transfer (STTR), maintains a national database platform to support the collection of brain injury outcome measurement data. At this point, use of outcome measurement tools supported by OutcomesInfo’s platform and submission of data to the national database is voluntary.

要求使用单一的工具或一组结果测量工具，与WHO ICF一致，从急性状态下的放电点到急性后连续护理，将有助于理解脑损伤后的残疾生物学。通过国家卫生研究院（NIH）的小企业技术转让（STTR）开发的基于网络的数据库系统“结果信息”，维护一个国家数据库平台，以支持对脑损伤结果测量数据的收集。在这一点上，成果信息平台所支持的成果衡量工具的使用和向国家数据库提交数据是自愿的。

OUTCOME MEASUREMENT RESEARCH HAS NOT TRANSLATED TO BETTER

PREDICTABILITY OF OUTCOME

结果计量研究没有转化为更好的结果
结果的可预测性

The expectation is better measurement of outcome will allow for analyses that support a better understanding of the factors that influence outcome. While true in theory, such analyses require the ability to control for variables that influence outcome. Unfortunately, brain injury rehabilitation outcomes research is characterized by vast differences in the demographics of individuals who are injured and in their access to care, substantial heterogeneity in etiology, severity, chronicity, and disease progression following injury, and important distinctions in treatment settings, provider expertise, intervention types and intensities,and measurement tools.Alone or in combination, each of the aforementioned variables can significantly impact the outcome of brain injury rehabilitation,making it extremely difficult to perform research studies that adequately control for these variables. The use of common outcome measurement tools across the continuum of care (see Figure 1), and the entry of those outcome data into a national database, would help provide a data set of adequate size and content to support research that can identify practices to improve outcome predictability.

预期是更好地衡量结果，这将有助于进行分析，有助于更好地了解影响结果的因素。理论上是正确的，但这种分析需要控制影响结果的变量的能力不幸的是，脑损伤康复结果研究的特点是受伤个人的人口组成和获得护理的机会存在巨大差异，在病因、严重程度、时间性和受伤后的疾病进展方面存在巨大差异，以及在治疗环境中的重要区别，提供者专门知识，干预类型和强度，以及测量工具。单独或结合，上述每个变量都能显著地影响脑损伤康复的结果，使得进行充分控制这些变量的研究变得极为困难。使用共同的成果衡量工具来衡量整个护理过程，并将这些成果数据输入国家数据库，这将有助于提供一套适当规模和内容的数据，以支持能够确定提高成果可预测性做法的研究。

INADEQUATE FUNDING TO SUPPORT ACCESS TO THE FULL CONTINUUM OF CARE NECESSARY FOR VALUE-BASED SERVICE DELIVERY MODELS

资金不足，无法支持获得基于价值的服务提供模式所需的全面护理

Although there remains significant room for improvement in brain injury rehabilitation, adequate knowledge and tested clinical interventions exist to treat brain in- jury effectively for improved outcome. However, few individuals who sustain a brain injury have access to the full array of services along the TBI continuum of care. Given the numerous variables that influence outcome and the often unorganized and inaccessible array of services along the continuum, it is extremely difficult to compare one brain injury outcome with another. Consider the difference in outcome between former Congresswoman Gabby Giffords and an 18-year-old gang member. While both experienced a bullet wound to the head during an assault, the many preexisting and injury- related variables (eg, age, preinjury education level, socioeconomic status, length of loss of consciousness, treatment access) must be considered before treatment- related factors can be reliably analyzed.

虽然在脑损伤康复方面仍有很大的改进余地，但有足够的知识和经过检验的临床干预措施，可以有效治疗陪审团中的大脑，从而改善结果。然而，很少有人能在TBI连续护理过程中获得各种服务。考虑到影响结果的众多变量，以及连续体中往往缺乏组织和难以获得的一系列服务，很难比较一个大脑损伤的结果和另一个。想想前国会议员Gabby Giffords和一名18岁的黑帮成员的结果吧。当两人在一次攻击中头部受枪伤时，有许多与受伤有关的因素（如年龄、受伤前的教育水平、社会经济状况、失去意识的时间），在对治疗相关因素进行可靠的分析之前，必须考虑治疗途径。

An alternative approach to outcome research would allow each person who receives a brain injury to access a coordinated array of services along the continuum of care during which time a standardized set   of data is collected. By standardizing in so much as providing the proper treatment intensity for the appropriate duration at the right time in the right setting (see Figure 2)—the treatment experience, individual demographics, and heterogeneity in etiology, severity, chronicity, and disease progression can be analyzed to provide better outcome predictability.

对结果研究采取一种替代办法，将使每一位脑部受伤的人都能在连续护理过程中获得一系列协调一致的服务，并在此期间收集一套标准化的数据。通过标准化，以便在适当的时间在适当的环境中提供适当的治疗强度，在适当的时间--治疗经验、个人人口统计以及在病因、严重程度、时间性方面的异质性，并且可以分析疾病的进展，以提供更好的结果可预测性。

The current political landscape supports health care service delivery that maximizes value, that is, improved health outcomes for the money spent. Brain injury services can be extremely expensive, making them a prime target for criticism and funding restrictions. Unlike treatment of a torn knee ligament, there is not a widely accepted and adequately funded course of treatment following brain injury. The absence of such inhibits a meaningful and accurate value-based analysis of services.

当前的政治格局支持医疗保健服务的提供，从而实现价值较大化，即改善医疗保健成果的支出。脑损伤服务可能极其昂贵，使其成为批评和资金限制的主要目标。与治疗膝盖韧带撕裂不同的是，在脑损伤后并没有一个被广泛接受和资金充足的治疗过程。缺乏这种能力妨碍了对服务进行有意义和准确的基于价值的分析。

The field of brain injury rehabilitation continues to develop. Increased appreciation for the moral and ethical responsibility to allocate adequate resources to support post-acute care should help improve access to the full continuum of care. Commensurate attention to improving interventions, improvements in imaging, and increased knowledge about genetic factors should help move best practice forward. There is a sense among leaders in the field that the future is bright.

脑损伤康复领域继续发展。增加对分配充足资源支持急性后护理的道德和道德责任的认识，应有助于改善获得全面护理的机会。适当注意改进干预措施、改善成像和增加对遗传因素的了解应有助于推进做法。这一领域的领导人有一种感觉，即未来是光明的。