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将残疾人纳入糖尿病临床与转化研究的科学依据。

Scientific reasons for including persons with disabilities in clinical and translational diabetes research.

作者信息

Moore Shirley M

机构信息

Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, Ohio 44106-4904, USA.

出版信息

J Diabetes Sci Technol. 2012 Mar 1;6(2):236-41. doi: 10.1177/193229681200600204.

Abstract

Despite disparities in health problems and outcomes, people with disabilities are underrepresented in diabetes research. This results in a lack of evidence-based knowledge regarding best approaches in caring for this population. This article addresses the need for research that includes people with disabilities and describes the common reasons persons with disabilities are not included in research, including scientists' concerns regarding threats to a study's internal validity and cost. Arguments are provided as to how involving people with disabilities in research will improve our science and reduce disparities in this population. In addition to the ethical reasons for including persons with disabilities in research, the ability to generalize study findings to this population and thus speed our development and translation of this knowledge for use by clinicians is discussed. The bias in study conclusions that arise from study samples that do not include persons with disabilities and its possible effect on care delivery are presented. Two strategies that researchers can use to increase the inclusion of persons with disabilities in research are described: (1) Universal Design of Research and (2) intervention optimization study designs. Universal Design of Research includes research design processes such as the use of multisensory formats for recruiting participants, approaches to designing and presenting research instruments and interventions, and methods of data collection to promote the inclusion of participants with a wide range of abilities in research studies. Intervention optimization study designs offer an efficient way for scientists to rapidly build the most potent interventions for a wide range of people, including those with disabilities participating in mainstream research.

摘要

尽管在健康问题和结果方面存在差异,但残疾人在糖尿病研究中的代表性不足。这导致缺乏关于照顾这一人群的最佳方法的循证知识。本文阐述了纳入残疾人的研究的必要性,并描述了残疾人未被纳入研究的常见原因,包括科学家对研究内部效度和成本威胁的担忧。文中还论证了让残疾人参与研究将如何改进我们的科学并减少这一人群中的差异。除了将残疾人纳入研究的伦理原因外,还讨论了将研究结果推广至这一人群的能力,从而加快我们对这些知识的开发和转化以供临床医生使用。文中介绍了因研究样本未纳入残疾人而导致的研究结论偏差及其对医疗服务提供可能产生的影响。描述了研究人员可用于增加残疾人参与研究的两种策略:(1)研究的通用设计和(2)干预优化研究设计。研究的通用设计包括研究设计过程,如采用多感官形式招募参与者、设计和呈现研究工具及干预措施的方法,以及促进各种能力的参与者纳入研究的数据收集方法。干预优化研究设计为科学家提供了一种有效的方式,以便迅速为包括参与主流研究的残疾人在内的广泛人群构建最有效的干预措施。

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