Cieza et al.

BMC Medicine (2018) 16:14

DOI 10.1186/s12916-017-1002-6

DEBATE Open Access

Rethinking Disability
Alarcos Cieza1*, Carla Sabariego2, Jerome Bickenbach3 and Somnath Chatterji4

Abstract
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.
Keywords: International Classification of Functioning, Disability and Health, Disability, Health Status Indicators, Model
Disability Survey, Global Burden of Disease, Public Health

Background of mortality. While it is important to know why people

Disability as a health outcome deserves more attention die, it is also important to understand how they live
than it has so far received. We present here an argument (with their health conditions). With population ageing
for rethinking disability within clinical and public health and advances in medical technologies, people every-
contexts. There has been a recent global focus on where are living with multiple chronic conditions and
disability as a development issue with a global impact experience higher levels of disability. An integrated
[1]. With people living longer around the world and the approach to healthcare requires a focus on improving
epidemiological transition from infectious to noncom- health and reducing disability and not merely controlling
municable diseases (NCDs) as the major cause of health disease symptoms.
burden, we need to focus attention on disability – the To determine whether health interventions at the individ-
non-fatal impact of heath conditions – as well as causes ual or population levels are producing the desired health
gains, we need a clear conceptualization of non-fatal health
* Correspondence: ciezaa@who.int
1
outcomes and an approach to measurement of disability
Department of Management of Noncommunicable Diseases, Disability,
Violence and Injury Prevention, World Health Organization, Geneva,
that allows for an appropriate and fair comparison of the
Switzerland impact of different health conditions (disorders, diseases,
Full list of author information is available at the end of the article

© The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Cieza et al. BMC Medicine (2018) 16:14 Page 2 of 5

and injuries) as well as the gains from clinical and public across different domains characteristic of their under-
health interventions. We need to quantify the magnitude of lying health conditions, these can be combined such that
these health gains over time at the individual level, which the extent of functioning (or disability) can be compared
can then be aggregated over the population rather than across these different profiles. Whenever decrements in
simply dividing the population of interest into those who health are being quantified, either by means of data from
are disabled and those are not. Although disability advo- population health surveys or in the estimates underpin-
cates will require estimates of prevalence of disability in ning global health reporting, a common conceptual basis
order to argue for the right policy, we should take care how allows them to be compared along a single scale.
these estimates are created and what they will be used for. The basis of all of WHO’s ongoing work is a set of princi-
Rather than merely counting the number of people, for ples: The first is that disability is a universal human experi-
example, with chronic health diseases as a proxy measure ence, not a mark of a demographic minority, although
of disability in the population, it would be far preferable to given the social stigma often associated with disability, it is
actually determine the extent of disability across the popu- understandable if advocates insist that theirs constitutes a
lation irrespective of the underlying health condition, and minority identity. Secondly, disability is etiologically neutral,
use some plausible threshold, as fit for purpose, to deter- in the sense that this decrement in functioning is not linked
mine population prevalence. Quantifying the magnitude, to, or solely predicated on the presence of a specific health
in short, requires a measure that is continuous, that is, a condition characterized by signs and symptoms. Having
measure of an amount rather than a count. difficulties leaving one’s home, whether it stems from
restricted mobility due to spinal cord injury or a patho-
Main text logical fear of open spaces as in agoraphobia, has compar-
The World Health Organization (WHO) has systematic- able impact on a person’s life. Etiological neutrality ensures
ally developed a common conceptualization and an a parity between disability arising from physical and mental
approach to measurement of disability. With the first health conditions. Lastly, disability lies on a continuum
Global Burden of Disease (GBD) study [2], WHO pro- from no disability (full functioning) to complete disability.
vided a metric that enabled the comparison of the This continuum can be partitioned by a threshold identified
impact of diseases. This allowed, for example, a compari- as fit for purpose, including, for example, advocacy for pol-
son of diabetes with depression and provided a measure icy change. Because disability is a continuous phenomenon,
of parity between physical and mental disorders. The changes in this quantity can be tracked over time, and
GBD study drew on a model of disability that focused across individuals and populations, including, in particular,
on decrements of health. This model has since been changes linked to clinical or public health interventions.
elaborated in the International Classification of Func- Because disability is continuous, it is also universal, since
tioning, Disability and Health (ICF) as being either an over the course of a person’s life the chances are extremely
intrinsic feature of the individual or arising out of the high that, in some domain, he or she will experience some
interaction between the individual’s health condition and decrement in functioning. In other words, human function-
contextual factors [3]. This conceptualisation continues ing ranges from full functioning to some limitation in
to be reflected in WHO’s World Report on Disability [4] functioning to complete loss in functioning.
and in WHO’s World Report on Ageing and Health [5]. Unfortunately, information on disability is often used
Three consensus points about health formed the only to dichotomize the population into those who are
basic components of the face validity of WHO’s health ‘disabled’ and those who are not without capturing the
measurement strategy: that health is a determinant of, entire breadth of the disability spectrum. This
but does not coincide with wellbeing; that health is a approach typically entails counting impairments, such
function of states or conditions of the human body or as blindness, deafness and intellectual impairment, or
mind, constituted by the person’s intrinsic capacity to counting limitations in some specific domains of func-
execute specific tasks and actions in a range of domains tioning or in Activities of Daily Living (ADLs) and
that capture the full breadth of human functioning; and Instrumental Activities of Daily Living (IADLs). Count-
that health is an intrinsic feature of the individual [6]. ing impairments, or limitations in functioning in indi-
Taken together, health for measurement purposes is vidual domains, ADLs and IADLs does not allow one
conceptualized as an aggregate across domains of func- to quantify the magnitude of impact of different health
tioning that are intrinsic to the person and describes conditions in a comparable manner. Yet a majority of
the health status of an individual. This can be further people who currently receive disability benefits and
aggregated over the population. supports are those with chronic diseases accompanied
It follows that human functioning, and decrements of by a significant level of disability, rather than specific
functioning or disability, lies on a continuum. While in- impairments [7]. Furthermore, by not quantifying the
dividuals may have very different profiles of functioning magnitude of disability in a comparable manner across
Cieza et al. BMC Medicine (2018) 16:14 Page 3 of 5

these health conditions there is no way of determining interventions need to be tailored to improving health sta-
whether any particular individual has more or less dis- tus, making the environment more facilitating through the
ability than another, and so is in need of more or fewer provision of assistive technology and personal assistance,
resources. Although ADLs and IADLs are etiologically and making the built, attitudinal and social environments
neutral, by their very nature of being designed to capture more accommodating, accessible and conducive to better
disability in older adults, they fail to capture mild and functioning. Clearly, it is also crucial that we have the abil-
moderate decrements in health along the entire spectrum ity to determine, quantitatively, which of these interven-
of functioning over the life-course, inasmuch as a person tions are the most effective and the most cost-effective.
will only experience these difficulties if their disability has Adequate, effective and reasonable interventions in all
crossed a certain threshold. ADLs refer to the basic tasks three domains can only be accomplished if we have a
of everyday life, such as eating, bathing, dressing, toileting, complete understanding of the experience of disability op-
and transferring and inability to execute these tasks indi- erationalized for measurement purposes.
cate some degree of dependence and the need for assist- Every clinician should appreciate that his or her pa-
ance [8, 9]. It is important to be able to identify people tient experiences their health in terms of how it impacts
with milder limitations, since these can be the focus of their daily life, fully contextualized by their environment.
public health interventions and are likely to produce the Diagnosis of signs and symptoms is an essential tool, but
most gain in population health. from the patient’s perspective what matters is what she
WHO has long recognized that the lived experience of or he can or cannot do in daily life. This is all the more
disability is significantly influenced by people’s real-life en- relevant where the presence of comorbidity, very com-
vironments. Interventions to make the environment more mon in NCDs, means that managing individual diseases
facilitating enable people to do the things that matter to is often unlikely to produce the desired outcomes. Clini-
them and that improve wellbeing. Health and social cians, or others, called upon to apply a protocol for
Table 1 Characteristics of both versions of the Model Disability Survey
MDS Stand-alone Version MDS Brief version
Goal National or regional implementations as a dedicated standalone Integration in existing household surveys as a disability module
disability survey
Implementation every 5 to 10 years flexible, continuous
Developed in 2012 2016
Length in time 60-120 minutes 10-15 minutes
Core modules:
Environmental factors This module contains a broad inventory of questions Contains 13 questions about:
about: - Hindering or facilitating aspects of the general environment
- Hindering or facilitating aspects of the general - Use and need for personal assistance
environment - Family and social support
- Use and need for personal assistance - Attitudes of others
- Family and social support - Use and need for assistive devices.
- Attitudes of others
- Accessibility to information
- Regular use of medication
- Use and need for assistive devices for self-care, mobility,
cognition, seeing and hearing
- Presence and need of modifications at home, school, work and
community.
Functioning The module includes 47 questions covering the actual performance Contain 12 questions of the standalone version, selected for their
of tasks and actions in day-to-day life in the following 17 functioning ability to generate individual disability scores comparable to the
domains: mobility, hand and arm use, self-care, seeing, hearing, pain, ones generated with the standalone version.
sleep and energy, breathing, affect, interpersonal relationships,
handling stress, communication, cognition, household tasks,
community and citizenship participation, caring for others and
work and schooling.
All questions target performance considering health conditions and
the physical, social, attitudinal and political environment of the
person.
Health conditions and capacity Altogether 17 questions target the intrinsic capacity of a person, Contain 12 questions of the standalone version, selected for their
determined solely by health conditions, in the same 17 domains ability to generate individual capacity scores comparable to the
covered in the functioning module. ones generated with the standalone version.
Additionally, a self-report part about the presence of health
conditions and impairments is included. If a respondent endorses a
health condition, three questions follow: 1) whether any health
professional has ever diagnosed it; 2) whether the person has been
given any medication in the last 12 months; and 3) whether the
person has been given any other kind of treatment, beyond
medicines, in the last 12 months.
Cieza et al. BMC Medicine (2018) 16:14 Page 4 of 5

determining disability for social supports or services Acknowledgements

need to realize that the impact of the person’s actual en- Not applicable.

vironment can – positively or negatively – make all the Funding

difference. A person with a severe health condition may, Not applicable.
with supports, be able to fully participate in school, fam-
Availability of data and materials
ily and work; while a person with several mild health
Not applicable.
conditions, in an unaccommodating environment, may
experience near total disability in these same domains. Authors’ contributions
Having laid the groundwork for this understanding of AC led the paper and structured the first draft, with all further authors
contributing substantially to the arguments of the paper. All authors revised
disability, WHO has designed and implemented the the paper, AC and CS finalised the manuscript and prepared it for
Model Disability Survey (see Table 1) that collects infor- submission. All authors contributed equally to this work, read and approved
mation relevant to the intrinsic capacity of individuals to the final manuscript.

quantify levels of health, the actual performance of tasks Ethics approval and consent to participate
and actions in day-to-day life, and barriers and facilita- Not applicable.
tors in the environment in order to understand the lived
Consent for publication
experience of disability [10]. As disability gains promin-
Not applicable.
ence within the development agenda in the United
Nations Sustainable Development Goals [1], and the Competing interests
human rights agenda with the implementation of the The authors declare that they have no competing interests.
United Nations Convention on the Rights of Persons with Disclaimer
Disabilities [11], the MDS provides countries with the The authors alone are responsible for the views expressed in this article and
needed data to monitor progress towards achieving their they do not necessarily represent the views, decisions or policies of the
institutions with which they are affiliated.
obligations. The MDS effort is, moreover, linked to
Universal Health Coverage and other prominent WHO
activities, such as the global strategies and action plans Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in
for disability (WHA66.9) [12], mental health (WHA66.8) published maps and institutional affiliations.
[13], noncommunicable diseases (EB130.R7) [14] and
Author details
ageing (A69/17) [15]. The MDS approach not only 1
Department of Management of Noncommunicable Diseases, Disability,
makes it possible to disaggregate outcomes of interest Violence and Injury Prevention, World Health Organization, Geneva,
along the disability continuum for those who experience Switzerland. 2Department of Medical Informatics, Biometry and
Epidemiology-IBE, Chair for Public Health and Health Services Research,
severe, moderate and mild disability, as identified by
Research Unit for Biopsychosocial Health, Ludwig-Maximilians-Universität
suitable thresholds. But the MDS also enables decision- (LMU), Munich, Germany. 3Department of Health Sciences and Health Policy,
makers to go beyond to identifying the factors that are University of Lucerne and Swiss Paraplegic Research (SPF), Nottwil,
Switzerland. 4Department of Information, Evidence and Research, World
responsible for inequalities allows them to identify
Health Organization, Geneva, Switzerland.
appropriate and effective interventions and policies.
Received: 16 August 2017 Accepted: 27 December 2017

Conclusions
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