Cieza Alarcos, Sabariego Carla, Bickenbach Jerome, Chatterji Somnath
Department of Management of Noncommunicable Diseases, Disability, Violence and Injury Prevention, World Health Organization, Geneva, Switzerland.
Department of Medical Informatics, Biometry and Epidemiology-IBE, Chair for Public Health and Health Services Research, Research Unit for Biopsychosocial Health, Ludwig-Maximilians-Universität (LMU), Munich, Germany.
BMC Med. 2018 Jan 26;16(1):14. doi: 10.1186/s12916-017-1002-6.
Disability as a health outcome deserves more attention than it has so far received. With people living longer and the epidemiological transition from infectious to noncommunicable diseases as the major cause of health burden, we need to focus attention on disability - the non-fatal impact of heath conditions - over and above our concern for causes of mortality.With the first Global Burden of Disease study, WHO provided a metric that enabled the comparison of the impact of diseases, drawing on a model of disability that focused on decrements of health. This model has since been elaborated in the International Classification of Functioning, Disability and Health as being either a feature of the individual or arising out of the interaction between the individual's health condition and contextual factors. The basis of WHO's ongoing work is a set of principles: that disability is a universal human experience; that disability is not determined solely by the underlying health condition or predicated merely on the presence of specific health conditions; and finally, that disability lies on a continuum from no to complete disability. To determine whether interventions at individual or population levels are effective, an approach to disability measurement that allows for an appropriate and fair comparison across health conditions is needed. WHO has designed the Model Disability Survey (MDS) to collect information relevant to understand the lived experience of disability, including the person's capacity to perform tasks actions in daily life, their actual performance, the barriers and facilitators in the environment they experience, and their health conditions. As disability gains prominence within the development agenda in the United Nations Sustainable Development Goals, and the implementation of the United Nations Convention on the Rights of Persons with Disabilities, the MDS will provide the data to monitor the progress of countries on meeting their obligations.The lesson learned from WHO's activities is that disability is a universal human experience, in the sense that everyone can be placed on a continuum of functioning and either currently experiences or is vulnerable to experiencing disability over the course of their lives. This understanding of disability is the key to mainstreaming disability within the public discourse.
作为一种健康结果，残疾应得到比目前更多的关注。随着人们寿命延长以及流行病学从传染病向非传染性疾病转变，后者成为健康负担的主要原因，我们需要将注意力集中在残疾上——健康状况的非致命影响——而不仅仅关注死亡原因。通过首次全球疾病负担研究，世卫组织提供了一种衡量标准，能够利用侧重于健康减损的残疾模型来比较疾病的影响。此后，该模型在《国际功能、残疾和健康分类》中得到进一步阐述，它既可以是个体的一种特征，也可以是个体健康状况与环境因素相互作用产生的结果。世卫组织当前工作的基础是一系列原则：残疾是一种普遍的人类经历；残疾并非仅由潜在健康状况决定，也不仅仅基于特定健康状况的存在；最后，残疾处于从无残疾到完全残疾的连续统一体上。为了确定个体或群体层面的干预措施是否有效，需要一种残疾测量方法，以便能够在不同健康状况之间进行适当且公平的比较。世卫组织设计了残疾问题示范调查（MDS），以收集相关信息，从而了解残疾的实际体验，包括个人在日常生活中执行任务和行动的能力、他们的实际表现、他们所经历环境中的障碍和促进因素以及他们的健康状况。随着残疾在联合国可持续发展目标的发展议程以及《联合国残疾人权利公约》的实施中日益突出，残疾问题示范调查将提供数据，以监测各国履行义务的进展情况。从世卫组织的活动中吸取的教训是，残疾是一种普遍的人类经历，即每个人都可以被置于一个功能连续统一体上，并且在其一生中要么目前正在经历残疾，要么容易经历残疾。这种对残疾的理解是将残疾问题纳入公共话语主流的关键。
